Working while chronically ill.

I’ve been sitting here for the last hour trying to figure out a title that best represents how I feel about what I’m about to write, and when I stumbled upon the recent Starbucks arrest of two black men, and how people express experiencing  the discrimination they call, “shopping while black”, I knew I had found a winner.

I don’t write much, anymore. In fact, I don’t officially write anything substantial unless I’m emotionally thrown into doing so. My best work comes from being deeply sad, angry, or hurt in general, and most of it I’m able to vent out on my Instagram page in the 2,200 character limit under each post.

This time won’t be the case.

In addition to feeling like I have more than just a little to say, I think the topic of being sick in the workplace is something that deserves more attention than a drive-by mention. I find this incredibly difficult to articulate most of the time, because I think every person’s situation is dramatically different, and when it comes to health, almost nothing is predictable. And even when it is, how people handle it varies, drastically.

I am someone who grew up looking at my illness as another appendage. I’ve never wanted to stand out because of it; I’ve never wanted pity or special treatment. All I ever wanted, really, was to be given the same opportunities as the person or people next to me who apply the amount of effort that I do.

Which happens to be a lot.

I’m not even talking about the extra effort it takes to be sick AND be a respected employee. I’m not counting the energy it takes me to shower, the money I spend on cabs, or the emotional stress that comes with not ever being able to turn my illness off. I am simply comparing oranges to oranges – which, in the most basic sense, to me, means: does the work get done?

Unfortunately, I can safely say in the adult season of having my career, which is nearly rounding 11 years, my productivity, quality of work, or commitment to my employer have never been what has been the focus of evalution. You can be smarter, faster, more resourceful, personable, and take initiative, but if you have to also juggle regular medical appointments, can’t physically be present for an exact schedule, or are limited to wearing flats instead of “power heels” because sneakers are the only shoes you are actually able to walk in, you will start to notice the trend of training others to move on while you stay exactly where you are.

At this point, I feel it’s necessary to reiterate and mention a few things to provide clarity on what I do not expect from an employer. As mentioned above: I don’t expect special treatment. I don’t expect to be handed an easier path. And I don’t expect it to be acceptable if I can’t complete the tasks surrounding the role I’m hired to do.

With that said, making reasonable accommodations for physically disabled employees is not special treatment. It’s treatment, period. I have as much control over my handicap as someone has over his or her natural hair color.

Next, making reasonable accommodations for physically disabled employees is not an “easier path.” It’s a path. Would an accommodation I receive be “easier” for those without my physical disability? Sure. But it would also be “easier” if I didn’t need to get chemo infusions once a month to do what other people can do just by waking up and wanting to.

Which brings me to the last point. Being chronically ill has never been a choice for me. Has it made me way more badass? Yes. But it wasn’t something I decided to try out for fun. One of the largest problems I face in the workplace is that being physically limited is often translated as “less motivated.” Working in healthcare operations means that you have to be “on” during specific hours, and prepared for when the shit hits the fan. I care more about my career than I do most things, so I have prided myself in learning the intricacies of my profession, mostly thanks to being a patient, so I can plan and coordinate my medical care around making sure my job gets done.

And my job gets DONE.

It shouldn’t matter if I’m creative about how it gets done; the focus should be on the fact that it does. And well. Every time. I empower staff to be strong and independent, so I can trust them to make important decisions, if necessary, in my absence. I build solid relationships with every walk of life in the workplace, so I can expedite issues quickly and without hassle. I make sure that my work is thoughtful and complete, and I do whatever I need to do to make that happen, so the final product is valuable and respected, to a fault. I function through pain meds; I check technology issues in the middle of the night; I have taken work calls while Remicade pumps through my veins on Saturday mornings.

But regardless of all of this, we live in a society that dehumanizes the process of making a living. Don’t get me wrong – I am someone who relies heavily on routine and structure. However, why the hell does it matter if I get to work at 9 or 9:20 or even 11:20, if I am responsive when emails come my way, if I am savvy enough to do my job from a cab (or my bed, for that matter), or if I am blowing past deadlines and submitting content that exemplifies my competence? Why don’t we understand, sick or not, that these are the reasons Americans are so miserable? Life doesn’t happen when we want it to – it just happens. So how can we expect anyone, especially sick people, to be able to work with that?

But don’t forget – if sick people don’t work and submit to the “benefit” (heavily quoted, by the way…) of being on disability, it means they are lazy and not contributing to society, right?


So how do we win? I put myself through undergrad with a dual major and minor, and immediately moved out on my own, started working full-time a week later, and began grad school right after that. I completed my 3-year master’s program in 2 years, while working full time, which frankly, is a feat before even considering the fact that I have a debilitating, degenerative, aggressive joint disease. I’m not asking for a hand-out because I had to bust my ass to do it as a sick person; I’m asking to be seen for my professional qualifications – many and most of which my peers do not possess.

And this is where I get really, really, frustrated. I have never been promoted. I have been reprimanded and disciplined for lateness and attendance “issues”, which is really interesting since my work has never suffered. Also, I haven’t taken a vacation in four years. Yes, you read that correctly. I have used all of my sick and vacation time for one thing, and one thing alone: to manage my health. And I’m not talking about unexcused absences, even. It has been years since I’ve called out of work for any kind of illness, which is absurd, since I wake up sick every. single. day. But since I don’t spend my vacation days at the beach, the perception is that I am worth less to the overall organization.

I’m not naive. I understand that people abuse sick and FMLA benefits all day every day. But as a manager of staff, those people are easily spotted from miles away. They call out every time it snows, or rains, or has either of the two in the forecast. Or better yet, they call out every time it’s sunny also, and come in with a nice tan when they come back to work. These are also people who simply say, “I can’t” instead of “I’ll figure it out.” Don’t you think it would be more beneficial for me to get my infusion treatments on a weekday, so I can be better by the weekend? The only reason I do them on Saturdays is to preserve my time at work.

In the four years I’ve been at my current job, I’ve had different managers and have been handled differently between the two. I’m very grateful, because the role I currently have is much more removed from the operation than it had previously been. I have also had the flexibility to work my medical appointments into my day and work from home when exceptions in my health arise. However, I can’t help but feel that the perception from my employer is that these accommodations that I need to function, no, SURVIVE, are acceptable substitutions for being promoted and considered for growth opportunities.

A year ago, I was asked to move into my current role, and I declined. A few months later, I was told I no longer had a choice. I was told it wasn’t punitive.

It felt punitive.

As I do with everything else I have to deal with in my life, I took this opportunity as a challenge. I stepped up. My entire day-to-day changed, along with the expectations of how I would function as an employee. I had never done project work before, and it’s not the job I was hired for. Not even close. But I did it, and with the same enthusiasm I’ve done jobs I’ve actually wanted.

However, all of my peers have moved on (read: “up”) within a year or two of their hire. When discussing it with my manager (who I greatly respect and value, and has worked with me more than any other manager before him has), he reiterated something he says to me often, which is that the “right” opportunity hasn’t presented itself to me yet. I find that really hard to accept, when my feeling is that the opportunity DID present itself, about a year ago, when the hospital I work for needed a project manager. They didn’t recruit for it; they didn’t create a new position and use it as a growth opportunity for someone who had worked hard for it; they laterally moved me and told me I had to learn a whole new set of skills.

The thing that made me most emotional and discouraged about the dialogue surrounding my concern was that there was an expectation that I be grateful for my accommodations (and of course I am – I’ve had horrible managers who haven’t treated me half as well) – but more than that: that my employer’s extension of offering me the things I NEED should satiate my desire to be offered the things I’ve EARNED.

And this has been a recurring theme in my life in so many places. When you have a special need that “easier” people don’t require – whether it’s physical or emotional – we are led to believe that once that need is met, we shouldn’t ask for anything more.

I’ll admit, I’ve been content with this notion for a really long time, mostly because I know what it’s like to suffer. I know what it’s like to feel abandoned by a mentally ill parent; I know what it’s like to be in a marriage that didn’t have passion; I know what it’s like to feel like a slacker, sneaking in and out of work, hoping that I don’t get caught because my meds didn’t kick in fast enough to punch-in on time.

“Be grateful, Beck, that you had mother figures in your life that stepped up when your mom stepped out.” “Be grateful, Babe, that you have passion, even if it doesn’t come with love.” “Be grateful, Rebecca, that you haven’t gotten fired for the issues surrounding your health, even if you do everything in your power to maintain your job performance.”

But if being sick hasn’t stopped me from working towards the life I want, why should it stop me from thinking it’s the life I deserve?

I don’t want to be victimized, nor do I want to be seen as a martyr. I have always owned my health’s circumstance, far more than most people think is natural. But as I’ve gotten older and I’m spinning around the same hamster wheel, it’s becoming intolerable to exist while I watch my peers travel, pay off debts, buy homes, and prepare for a comfortable retirement.

Maybe we should work on the language in the workplace and the stigma surrounding that language, as it relates to people with certain God-given limitations. Why is what I require a “special” need? Why isn’t it just a need? Why is what I require a reasonable “accommodation” and not just REASONABLE? What if everyone who was hired was just looked at as people, and they had to list their needs on paper before starting on day 1, right before they get their ID photo and a locker assigment? A clinician’s list might include a lab coat, a mom’s list might include a shift that mirrored her kids’ school hours, and a physically disabled person’s list might include having a seat near the bathroom.

I’ve never been someone who is overly sensitive about semantics and being politically correct. I’ve always functioned off of the belief that I am a good person at my core, and that intention is everything. But I wonder if putting certain systems in place to “protect” people has actually hurt people worse. I’ve analogized this to not wanting certain medications or diagnoses in my chart, because I know patients are often judged based off of how their medical record reads. It shouldn’t be, but it is. Like anything, there are laws against this kind of discrimination, but it exists.

It sort of feels like a catch 22. Since I’ve always been insanely transparent about my disease and how it affects my day-to-day, it can be used as a weapon against me, intentionally or not. However, my feeling has always been that there is some human component to sharing something that personal, or rather, harder for an employer to be  jerks if they know what I”m going through.

We all have needs.

Being seen past an illness is mine.









I am not the problem.

I am not someone who uses my disease as a “card.” And I am not someone who uses that card to feel entitled to special treatment. I believe, seemingly way more conservatively than many, that while certain accommodations are necessary for me, physically, I don’t feel my struggle is worse than someone with different problems that I’m lucky enough not to have.

With that said, on Tuesday night, I impulsively bought a ticket for a concert that was scheduled for the following evening. I do a lot of things impulsively (read: last minute) – mainly, I think, because I get so much anxiety about making plans too far in advance, in case I’m not well enough to attend when the actual date arrives. The concert was for a band that had been my favorite growing up, and I took it as a sign that less than 24-hours in advance, there were still seats available.

Many people who don’t face a life-consuming illness would think that was the end of the story. But for me, that’s where the stress began. Once the commitment to something has happened (especially commitment to something that I’ve paid money for), the planning process ensues. Thinking about navigating through the next day, I took a shower before bed, picked out an outfit that I could go from day to night with easily, put all of my potentially needed medications in my travel pill case, and planned to leave some things at work, so I wouldn’t have to carry them in tow.

I woke up feeling proud of myself. Proud to have challenged myself to step outside of my comfort zone, and proud that I put myself in a situation of readiness, so my anxiety, (while still present), wouldn’t completely overshadow my interest in going to the event at all. And as usual, as the day went on, I started having doubts, taking the cold weather into consideration, and the fact that yesterday was also my long day at work (a 10+ hour shift), but I swatted those thoughts away, reassuring myself that I had done my part.

So as the sky started getting dark, and my day was winding down, I started to feel like maybe I didn’t have to leave anything behind. Perhaps, if I consolidated my things well enough, I could bring everything with me to the concert and go home knowing I wasn’t without anything I might need. Innocently (read: stupidly), I went to the venue’s website to see if I could bring in my lunch bag. And as I scrolled to the bottom of the page, my heart sank when I landed on the following statement:

“No Drugs or Paraphernalia. (Prescriptions Drugs will not be allowed into the venue unless they are in a prescription bottle. The ID of the person holding the prescription must match the name on the bottle).”

First of all, let’s address the fact that “Drugs and Paraphernalia” are not the same as “prescription drugs”, nor is the connotation attached.

When thinking of the casual usage of “drugs”, especially next to the term, “paraphernalia”, we automatically think of something negative – drug addicts, drug abusers, and drugs that are illegal, used illegally, and possessed by someone who obtained them in a less than honorable way. However, when discussing prescriptions, or “prescription drugs”, as it’s stated on the website, the definition already explains that the drug is on a person who was prescribed to take them. And not just anyone can prescribe “prescription drugs.” Dog walkers can’t prescribe drugs. Bus drivers can’t prescribe drugs. Nor can circus clowns, accountants, or the girl who cuts your hair. Only a licensed medical professional is able to prescribe “prescription drugs”, which means there must be a good reason for doing so, other than “the patient wants to smuggle something into a concert venue.” Someone carrying prescription medications did not do anything wrong.

Next, let’s discuss the fact that I decided to be pro-active, because I was afraid I wouldn’t get into the show, and called the box office directly to ask about this “policy.” (I put policy in quotes, because I think it’s really nothing less than a scare-tactic, which I’ll explain later…). When talking to the numbnuts who answered the phone, he reiterated that the “policy” was true, and that it was enforced. After I explained that I am chronically ill, take many prescription medications every day to function, and that I don’t carry around 11 orange and white bottles to go with it because I’d need a sidecar to do so, the guy continued to repeat that the “policy” had no exceptions.

Because I’m me, I pushed back, which made the guy on the phone go talk to security. When he got back on the phone, the story was the same, except for the fact that now I was being told that I would “not be admitted into the concert with ANY pills on my person.” Woah, woah, woah. “‘Any’ pills?”, I asked? “Do you have doctors searching people at the entrance to the theater? Because I’m curious about how your security guards are qualified to determine whether or not the medications I’m carrying are over-the-counter or prescription.”

The guy on the phone continued to say, on repeat, “you will not be allowed into the theater with any pills that aren’t in a prescription bottle.” When I asked why it specified “prescription” on the website and if people carrying Tylenol were being sent away, he knew he had screwed up, and his method of avoiding it was to just stay committed to the phrase he had been using.

So I asked for my money back. I told the guy that I don’t ever use my medical condition as a button to push, but in this moment, I felt that I was being discriminated against, because nowhere during the ticket-purchasing process was I informed of this “policy.” The guy tried to defend this by saying it is “clearly” stated on the website, to which I replied, “when’s the last time you bought tickets for a concert and decided for ‘funzies’ to get check out the ‘Frequently Asked Questions’ page? Also, I think it’s also probably very unlikely that someone who was carrying illegal drugs would call the music venue to ask for permission to bring them in.”

I’m just saying.

I continued to offer solutions, like bringing a copy of my medical records, or better yet, going to the pharmacy and getting printed proof for the prescriptions I was carrying. No dice for any of it. And obviously, I was told that they would not refund my ticket, so I got off the phone because I knew I wasn’t going to get through to this asshat.

Now, I’m staring at the clock, trying to figure out if I’ll be able to get home in time to get the pill bottle(s) and get back to the concert, and considering if it would even matter. “Would I feel safe enough to bring NO medications with me?” No. “Do I need more than one medication?” Yes. “Do I need to take a pill bottle for each RX?” Who the fuck knows? “If I decide to go the safe route and bring several bottles with me, will my bag then be too big to bring in without checking it, ultimately losing my access to my meds, anyway?” Probably.

As a last ditch effort, I called my regular Pharmacy and spoke to a Pharmacist that has been helping me for years. He felt badly about the situation, and even said that if I was closer to his store, he’d have made me a prescription bottle with my name on it to throw my pills into, but unfortunately, the store is on the block I live on, so I figured I might as well go get the real ones at that point.

After deciding that I wasn’t going to lose this fight (meaning, I was still going to go to the concert), I hauled my ass home in a cab (which I shouldn’t have had to pay for), quickly decided to take one pill bottle and risk throwing multiple meds in, changed my clothes, and ended up having to take the subway back to Times Square, because I knew I’d never make it in rush hour traffic. I rarely take the subway because of all of the walking/standing/stairs, but as a physically disabled person, I was unnecessarily inconvenienced further, because our country has no way to monitor the abuse of narcotics.

After trekking across the city underground, I ended up just barely getting to the concert on time, and when I showed up and told security that I couldn’t stand on the line waiting to enter, they moved me right in, which was helpful.

But this is where my issue got real.

I was taken through the red ropes to bypass the queue, and before entering the building, they asked that I show them my bag. (This was it. This was what the previous two hours would amount to.) I stood there, so pumped and so ready for them to see the medication bottle and to confirm that it was my name on the label. But as I expected, the man doing the check only opened one of the two zippered sections (the one that didn’t have my medication in it…), pointed his flashlight on the top of my purse, and said, “Have a good night.” I could have had a bag of weed or a handgun in my bag and they would have let me through.

And this is why I’m frustrated. Not only did I figure that the “policy” on the website was garbage, I was repeatedly told on the phone that I “would not be admitted in without the appropriate proof” of medications I need to function. I was able to walk up to a security guard and ask to cut a whole line of people without showing proof, so why in the world should I be questioned about pills in a pill case?

Do I understand that there is an opioid epidemic? Of course.

But I am not the problem.

A few years ago, when they started cracking down on the narcotic prescriptions, it was a horrible adjustment period for the chronically ill. My specialists no longer wanted to manage my pain, because they feared being audited by the FDA. I had to start seeing a pain-management specialist, which was another copay from my wallet.

When it came to actually filling my prescription, many drug companies pulled way back in the production of these medications, so I spent hours calling a bunch of different pharmacies in New York to see if they had the pain medication I was prescribed. To make matters worse, I often wasn’t able to get accurate information on these calls, because pharmacists would either give me shit for calling about a narcotic over the phone (making me seem like a drug seeker, because in that moment, I guess I technically was), or they would lie and say they didn’t have it because they didn’t feel comfortable giving out that information. As a physically disabled person, I had to run all over Manhattan, walking in and out of storefronts, showing them that I had the paper prescription (to prove that I was legit), and question whether or not they had enough to fill the script. The anxiety I would get every month was absolutely absurd.

When they mandated that controlled substance RXs could only be sent to pharmacies electronically, my anxiety about this heightened, because at least if I had the physical prescription and the pharmacy didn’t have the medication, I could go somewhere else. However, if an electronic prescription is sent to a pharmacy and they don’t have the drug, they can’t transfer the prescription anywhere else because it’s a controlled substance. You have to then go back to your doctor and beg him/her to send it to a different location.

It’s a viscous, viscous process.

So my final question is this: At what point will it be enough for me to just be sick? To have to wake up in pain every day? For me to have to figure out how to be a contributing member of society, working full-time in an effort to keep my medical insurance and pay for all of my medical bills, while also juggling several doctors’ appointments each week and acute issues that come up, like visits to the ER or recovering from monthly infusions? When will it be enough that I have to plan every second of every day unless I want to face failure? And plan it to the point where it often overshadows any fun I could possibly have, and often makes me not commit to anything at all?

Why, on top of my horrible misfortune, should I have to do a song and dance because people are abusing the system? I’ve always been transparent about my illness and I am never defensive about proving that I’m sick, because I have plenty to provide in the way of clinical documentation since I’m ACTUALLY sick. But when I get up the courage to commit to an event, spending money I should be spending on medical expenses, and then have to be put out and basically treated guilty until proven innocent for a disease that I am just trying to navigate through, it’s frankly, bullshit.

As a manager, I always tell staff and coworkers that if you have a problem, you should come to the table with a resolve. So I propose that maybe we create some kind of ID card or wristband system that says that we are diagnosed with an illness that requires us the following:

  • prescription meds
  • narcotics (if necessary)
  • accommodations (a seat, low lighting, dietary specifications, etc.)

We have handicap tags for the cars we drive, why can’t we have something on our person to do the same function? I don’t care if I have to hang a huge sign from my freaking ponytail; we just need to find a way to address the issue without harming those who are already suffering.

I am not the problem.



Fork Your Spoons.©

Hello from Chronic Motivation land.

I am here to tell you a story about my interpretation of the reaction to “The Spoon Theory”, and how I feel it applies to me (and doesn’t apply to me).

In an Instagram live chat I held on April 21st, 2017, I was discussing some of the content that chronic illness forums put out into the universe, with derivatives of “The Spoon Theory” being at the top of the list. For those of you who aren’t familiar, “The Spoon Theory” is an essay that was written by Christine Miserandino, in an effort to help one of her friends understand what it was like to live with Lupus.

To read “The Spoon Theory”, click here.

In abbreviated terms (this is paraphrased), it’s basically understood in the chronically ill community that spoons are used as an analogy for levels of energy, or units to be doled out for anything requiring exertion of any kind. It was basically created to help people who aren’t chronic illies to understand that there is a limit that we hit every day, that more or less becomes our “shutoff point.” Do not pass go, do not collect $200, head straight for bed (and don’t forget the ice cream and the remote).

The theory also does a really good job of explaining how different activities cost us in different ways, and that if there is something we are really determined to do (like go to Prom and dance the night away, for example…), we can “borrow” from tomorrow’s reserve, but we’ll pay for it, and ultimately be laid up in bed recovering from overdoing it the day before.

I have been sick for my entire life – 32 years – and it was only when I saw Instagram’s chronically ill community of accounts that I became acquainted with “The Spoon Theory”, “spoons” and “spoonies” (a name chronically ill individuals call themselves as a result of the theory). It blew my mind to see how many people, people who more often than not are so passionate about not being “defined by their illness”, would label themselves as something that so specifically defines them, and of all things, by their illness.

(Note: I feel like this is the appropriate place to say that, as mentioned above, I do appreciate the Spoon Theory. I think finding a way to articulate, quantify and qualify what we experience every day, in tangible terms, no less, is long overdue, and for me, feels right. I don’t want my thoughts proceeding this statement to come across as an attack on a piece of prose that is warranted for receiving a lot of positive attention. I do, however, have some concern about the way this document has impacted the stigmas surrounding chronic illness, but only as a result of getting into the hands of some bad apples.)

For me, the Spoon Theory is what I think it should be – it’s effective and to the point. Referring to “spoons” isn’t too far behind it as far as my interest-level is concerned, but it does start to make me feel a bit uncomfortable. Finally, referring to myself as a “spoonie” is not something I’m attracted to at all, and I’ll explain why.

As someone who has only ever been battling a debilitating rheumatologic disorder (Blau Syndrome), I have accepted that the life I was born into is the life I will be living until there’s no life left in me. I didn’t have a choice in the matter, but I also have had nothing else to compare to. For this reason, I’ve always said that I give a lot more credit to those who were diagnosed later in life (my definition of later = past the point of remembering not being sick), because they know what they are missing. For example, I will never be sad about not being able to run the same way a runner diagnosed with RA at 25 years old will be sad about not being able to run. Of course, there have been moments in my life where I’ve felt out of place because of my physical limits (field day in elementary school was a major one), but I’ve never sat at home longing for a function that I never had.

With that said, since this is the only life I’ve known, it is what feels normal to me. I know that on paper, compared to every other 32 year old on the planet, there is probably not much “normal” going on for me physically, but all that has ever mattered to me (and will hopefully ever matter to me) is that relatively speaking, I’m living a normal life. And I think that’s sort of the key point that makes me hesitate when starting to label myself as anything other than what I am – which in my case, a physically disabled young woman. I think what many people fail to understand, whether it’s a result of a denial, a need for attention, or otherwise, is that everything is relative for everyone. I might have an autoimmune disease that roughs up my life in some ways, but other people my age might have lost both of their parents in a car crash as a child, or maybe they are sorting out navigating through life as homosexuals, or better yet – maybe their sore point is the fact that they’ve been exposed to no hardships at all, and they are just shitty human beings because they don’t know how to appreciate things.

What I’m really trying to say is that we all go through something; none of it is fair, and not all of it is out in the open. There is also a lot of discussion on social media about how chronic illies live with “invisible illnesses”, but the last time I checked, many illnesses, whether chronic or not, are not seen (headaches, stomach bugs, pulled muscles, etc.), and when walking through the streets of Manhattan, I’ve never seen “I just lost my job” or “I got an eviction notice” stamped across anyone’s forehead, either. There is nothing special or unique about being chronically ill – what makes chronically ill people special or unique has nothing to do with the chronically ill part at all… we are just another group of people, like any other group of people, facing a hardship, which in this case, manifests for us in a physically detrimental way.

It’s funny, because as I’m playing these typed words back into my head, it doesn’t sound like someone who is painfully struggling has written this at all – and that’s exactly what my intention is. I will not start using cutesy words like “spoons” to describe something that isn’t cute at all, and I will certainly not refer to myself as a “spoonie”,  since frankly, I think it’s a word that has become epidemically used and in many cases, abused. Because again, for a group of people who advocates so much to try to be seen as equals and not “disabled,” why would we go out of our ways to highlight the fact that we are different than the rest of the socially accepted population?

And this is when I say: “Fork your spoons.” ©

I don’t mean for that to sound aggressive, and again, I am not trying to discount or discredit the Spoon Theory in any way. I mean for that statement to be empowering, and to motivate the chronically ill population to really accept and appreciate their lives for what they are. We can’t sit here and denounce that we’re different, and then go to great lengths to identify ourselves as such. I say we be exactly who we are: chronically ill. I am a sick person. I am defined by my illness. I am physically disabled. These are just words, and words that, in my case, represent facts.

When I say I am a sick person, it’s because that’s exactly what I am. I am a person who is sick. Every second of every day. There are days I feel better than others, but even on good days, I am medically compromised. My autoimmune condition is always inside me, ready to fight, and just when I think it’s under control, it rears it’s ugly head. Knowing that, alone, humbles me constantly, because I know what a good day looks like, and when it’s happening, I savor it and pray to God it never goes away.

When I say my illness defines me, I’m saying it shapes me. It makes me a better person. My illness has made me tough, articulate, passionate, and wise. I am able to read people well, I matured at lightening speed, and I am more independent than anybody I know. I am so grateful for these character traits that I sometimes wonder if when people get upset by the idea of being “defined by” their condition (but label themselves as “spoonies”), they might not have fully come to terms with or accepted the fact that this is their permanent situation. Because once that epiphany presents itself, it isn’t hard to see the positives at all.

When I say I’m physically disabled, I’m saying I have physical limitations. Again, as someone who has truly accepted my fate, I am not afraid to use words that sound scary if they represent the truth. There are things that I know I just can’t do, and I’m OK with that. I’m sure there are things I think I can’t do that if I cared enough about, I’d do them, but I feel satisfied with that list at this moment. It’s not about a lack of confidence or downing myself, it’s about understanding what is actually within my reach, and not holding myself accountable for the things that aren’t. If there’s anything I’ve ever wanted to do badly enough, I’ve done it, regardless of my setbacks in mobility. This part of my life is what gives me drive and determination, and as a result, I know what hard work and perseverance look like.

The reason I’m explaining all of this today is because a) I am a passionate person, and b) I wanted to express my thoughts in a way that was thorough and representative of the entire picture. My experience utilizing social media to advocate for others suffering has been overwhelming, and not always in a good way. I am vulnerable and open about what my experience has been as a patient, but I also want to be clear in saying that I have, at times, been disheartened by the misrepresentation of how strong chronically ill people really are.

We are tough cookies, stronger than your average bear, feisty, brave and resilient. We’ve been through a lot, but the ones who have the best handle on it also know that we’re blessed with a lot. (And if there are some out there who haven’t reached that point yet, I hope it comes for them soon). We live our lives on purpose, with meaning, full of zest, and with the intention to do as much good as possible. We don’t need to feel validated by others, because we know the darkness that we keep locked away for no one to see. And the only attention we ever want, is not the kind that feels pity for our differences.

It’s the kind that celebrates them.

© Becky Lewand








I’m Becky.


For a little change in pace, I started writing this post from my infusion chair: my home-away-from-home, last Saturday morning. I’ve been doing this routine for 4-ish consecutive years, and it’s become such a part of my life that the first thing I did when I walked into “Bay 2” was rearrange the furniture. I know it sounds crazy, but when there are things in your life that are outside of your control (a chronic illness, for example…), it becomes easy to try to control everything else that isn’t.

For as long as I can remember, my lines have always been placed in this rock-star vein I have in my left arm, so when I saw the IV pole on the wrong side of the recliner, I had to immediately take action and swap it out with the vitals machine. I couldn’t let all of those wires cramp my style.

But the reason I lugged my laptop to my treatment, however, was not to get into “How to make your hospital room cute: 101”, it was because I have had a particularly nerve-wracking experience surrounding my regularly scheduled programming, and the part of it that really made me need to put hands to keys was an interaction I had with someone that left me questioning, “How do any of us do it?”

As most of you know, a good amount of the conditions that we suffer from in the chronically ill community cause our immune systems to become compromised. On top of that, the methods of treatment for those conditions tend to weaken them even more, which in a lot of cases, is intentional, but leaves us more susceptible to catching a whole slew of other shit we don’t need to be dealing with.

But what happens when the chronically ill become “healthy-people” ill? You know, the times that you wake up with something out of the blue, and there’s the strong likelihood that it’ll go actually go away? (A novel idea, I know).

Well, I was faced with this predicament this past weekend, and it caused me to have to make a serious judgment-call. “Should I postpone my Remicade infusion and wait out whatever is temporarily making me ill, or should I take a chance and have my treatment, making it harder for my immune system to fight off whatever is virally occurring?” Since my infusion center is booked-out for months, I was worried about causing a flare-up of my joint disease as a result of the delayed dose, so I decided to go with the latter. But as anyone can imagine, there was seemingly no right answer, and my anxiety about all of this went through the roof.

The thing is, I’m accustomed to having to make tough decisions on a daily basis, just usually to a much lesser degree. “Do I prep my meals for the week on Sunday night, stressing out my joints standing in the kitchen for a couple of hours, or do I push myself through the discomforts I experience in the morning before work to make my food for the day?” These decisions that we, as sick people, are faced with, seem light and airy at first glance, but the wrong choice could impact us greatly, and as I feel I’ve exemplified, both options are often detrimental in some way.

What I have yet to be able to deal with, however, after 32 years on this planet, is finding a balance between remaining tough while concurrently finding someone to lean on. It’s pretty natural to become more vulnerable when you’re not feeling well, so when you’re hit with a whole lot at once, I think it’s fair to say that you just want someone, anyone, to swoop in and say, “I got this.” I have never needed much from others in that way (although, I’ve certainly wanted it at times), and for some reason, I conditioned myself at a very young age to be exceptionally resilient when not getting that “want” met. I’m not sure where it stems from, because my parents were both very supportive and overprotective of their sick kid, but I’ve always handled my illness in a very black-and-white manner.

For example, last year, I somehow contracted e-coli for the second time in my life. When healthy people get this bacteria, they normally kick it within a few days, and most of the time they don’t even know they have it, because it just presents as a nasty stomach bug. I, on the other hand, develop debilitating abdominal cramping and a whole shitload (pun) of other gross symptoms that typically make me utter the words, “just end it all.” It’s easily my least favorite way to get sick, and I wouldn’t wish it on my worst enemy.

Obviously, when I’ve gotten that sick, I’ve taken a trip to the ER and was admitted, but I’ve been to the hospital on numerous occasions, many of which my family and friends don’t even know about, so that doesn’t automatically mean I’m panicking. The difference in this scenario was that I was sick to the point where fear crept in, and I ended up calling my parents because I was unsure of what the outcome would be. However, if for some reason I started to feel abandoned in the situation, I would have immediately rejected all offers for help and managed it on my own.

This is all a long way of getting to the reason I felt compelled to write. In my everyday life, with my everyday illness, I do it all. I manage my doctors’ appointments, make sure I take my medications, pick up my prescriptions from the pharmacy, and haul myself to and from medical facilities. And when I get sick after treatments, I take care of myself; I make sure I stock up on food, and I make sure I have natural and prescribed remedies on hand to deal with the side effects.

I walk my own damn dog.

And when my current dilemma came to be, where I started to feel the weight of everything that was happening to me physically, I expressed to a friend that it would be nice to have some company, mostly because I was afraid of having an allergic reaction as a result of my body being in a weakened state. I wasn’t necessarily asking for help, but I also wasn’t expecting the response to be that he wasn’t “comfortable” coming along.

Sitting and thinking about that response in this moment doesn’t have the same impact that it had when I was in distress, but it does leave me wondering. As I mentioned above, it takes a whole lot for me to feel the desire or warrant to even share that feeling with someone, but once I was rejected (again, for something I hadn’t even requested), I immediately shut down. Rather than allowing myself to feel disappointment, I iced that cake with a whole lot of “well, fuck you, then.”

It’s funny, because I know that’s probably not a healthy way of dealing with those types of situations, but I also know that it’s always worked for me, because I don’t waste time sitting around crying about selfish assholes when I need to be worrying about things that are more important. Also, that emotion almost always immediately repurposes itself into something better: fuel to fight. When I feel disenchanted by someone’s lack of integrity, I somehow become stronger and more determined to get through whatever I’m dealing with – but again, not from a healthy place – it happens out of spite.

A lot of us talk in my live chats and comment strings about how isolating it can be to be chronically ill, and for me, situations like this have been the main cause. Since I am dealing with something that controls everything I do, it’s hard for people to understand the emotional component that comes along with that. Being sick, for me, usually feels like a toss between convincing someone that I’m not a flake because my illness caused me to cancel plans at the last minute, and convincing someone that I don’t need help, because they weren’t going to help anyway. Maybe it’s a matter of pride, but no one wants to be labeled as incapable, especially when the cause, in this case, has nothing to do with my drive or determination otherwise.

As a result of these encounters, I have lost a lot of relationships in my life. Sometimes it’s a friend who decides they won’t make dinner plans with you ever again because they put on their “face” for nothing, or someone who uses your inability to be reliable as a scapegoat or justification for their own lack of consistency. Sometimes it’s someone who refuses to understand that you have physical limits, and makes plans that you can’t be a part of as a result of your incapacitation. Sometimes, you might be “blessed” by someone who decided that they need to start keeping score – you know, the ones who helped you hang curtains once or twice, and when you call them out for shitty behavior, they remind you of “that one thing” they did, “that one time”, 3 years ago. Worst of all, it can also be someone who comforts you in a way that makes you think it’ll all be OK, until they realize that providing any level of emotional support offers nothing tangible for them in return, and you’re left hanging out on a limb, with nothing but lost confidence in the human race.

For me, all of these interactions add scars, and sometimes I think it’s those scars that make me more resilient than anything you could see on my body. Because really, what is this life if you don’t have people to share it with? What exactly am I working towards, if I’m experiencing all of my successes alone? There are many people out there who say you shouldn’t expect anything from others, because then you won’t be disappointed, but I have always felt that this was just a bullshit way to rationalize away one’s ability to just be decent.

I’m not really sure what has made our society so cold. Over time, I’ve felt like we developed a general lack of commitment to anything, really, and that this character flaw has spiraled into this mess of everyone sort of being on their own, whether they know it or not. People get divorced after having a fight, and they cheat on their significant others rather than getting out of the relationship when the decision is made to not work on things. There also seems to be a ton of competition on social media to maintain some sort of semblance of a “cool” life, when no one appreciates how to create one that’s simply fulfilling.

What I’m trying to say is that I think if people took a step back, thought about their actions, and really understood how they affected others, perhaps we wouldn’t constantly be in this position of feeling entitled to act like animals. It’s interesting, because our society tells us that we SHOULD feel entitled to do/say whatever we want, because it’s our lives and to hell with anyone who gets in the way of that, but people forgot a long time ago that everything is cyclical. Putting bad energy out into the universe eventually comes back to us, and if you’re foolish enough to do that in your own immediate circle, you can be sure as shit that it’ll find it’s way back to you a whole hell of a lot faster.

When I lay down at night, I don’t just pray for loved ones on the surface and call it a day. I pray that those who lack compassion for others are able, at some point, to reboot their perspective and start viewing the interest in another’s well-being as an investment for their own. We need to stop cutting people out of our lives for things that deserve a slap on the wrist, or better yet… a conversation.

And finally, I feel that I’m living in a world where I am routinely punished for the hurt that those close to me have received from someone else. I am not perfect, and I’m sure this post probably gives the feeling that I think I am – but that’s not how I feel at all. I guess I just wish sometimes that rather than people relying on bitterness and questioning my genuineness (yes, it’s a word!) they would see “Becky” before anything else.

I’m not some opportunist who cancels plans with you for better plans with someone else – I’m Becky, and if I need to make a change at the last minute, it’s because my disease had other thoughts about how my night should go. I’m not some pathetic antisocial slug – I’m Becky, and if I say I can’t walk the mall with you, it’s because on most days I can barely walk to the bathroom. I’m not a charity case who expects people to do all the heavy lifting – I’m Becky, and if I ask you to help me with a repair in my apartment, you better believe I’ve already tried to do it myself.

I’m not the roommate who left you hanging with the other half of the rent in the middle of your lease. I’m not ungrateful or unappreciative of the little things in life. And finally, I’m not some girl who broke your heart. So before you see our relationship as “imbalanced” or taxing because I can’t commit to plans the same way, or because my memory was wiped out by meds, or because my gravitation towards you when I’m sick makes me look like a clingy girlfriend, please remember that you weren’t the only one inconvenienced, disappointed, or scared to be vulnerable. Before any of those thoughts creep into your mind, I beg you to remember one thing.

I’m Becky.



I ain’t sayin’ I’m a gold digger…

Hello from the land of Ramen and energy-saving light bulbs. Being sick is a lot of things, and being a total bank-account buzzkill is at the top of the list. As if it’s not bad enough to be schlepping around in a body that has a broken on/off switch, the healthcare industry (industry, business, corporate crapfest…) seems to have everything in mind BUT the actual well-being of the patient. Don’t get me wrong, I am the most fortunate and grateful person to be living and working in the world’s medical mecca (NY to the C!), but trying to navigate through the financial woes of chronic illness can be sickening all on its own.

I’ll start off by saying that I am writing this post due to the overwhelming feedback I got from people saying they could relate to the craziness that happens to me regarding my medical bills. I wish I was over-exaggerating when I say I have some sort of an administrative issue every 2 weeks on average, but it’s the truth. I’ve said it before and I’ll say it again – I am one of the “lucky” ones. I am educated. I have 31 years worth of experience as a sick person. And finally, healthcare: it’s what I do. And even with that armory of weapons in my corner, I still get hosed, screwed, and lost in the mix.

For the purposes of delivering what ya’ll are asking for, I’ll keep this post specific to the money stuff, even though it shares space with scheduling horrors, idiot office staff, clinical error and state prescription laws. I could (and will) write a book one day, but until that glorious light shines, we are here, and the bills are rolling in.

The first place I think we should go here is to talk about how many different avenues there are when it comes to the general payment of ones health. It’s funny, because reading that last statement back, it seems so inhumane for “payment” and “health” to even be in the same sentence. I wonder at what point in our history people changed from being good and kind to deciding that their life was only important if it was worth everything they own. It seems extreme, but I assure you that working with cancer patients for the last 10 years has made it very clear that when someone’s life is on the line, anything is on the table to be sold if there is a dollar sign attached to it.

So there are a few different things that can happen when you’re sick. You can ignore it (it’s free!) or you can seek medical attention. Whether it’s a walk-in clinic, the ER, or your family doctor, it’s gonna cost you some shells, and unfortunately, not literally. If you’re lucky enough to have health insurance, a good portion of the services might be covered, but even that has levels of security. And if you don’t have health insurance, you are still among a very large population, which in America, is around 15% or 30 million people.

Whether you have health insurance or not, it’s still insanely important to do your absolute best in trying to understand the billing process and the charges that will be coming your way.

For those who have health insurance:

  1. Know WHAT’s covered. Do you have a deductible? Do you have to hit a certain maximum out-of-pocket payment before your insurance decides to join the party? Do you have co-insurance? Are you responsible for a certain percentage of certain services, even after the deductible is met, again, before the insurance company steps up to the plate? Do you have a co-pay? Do you know what it is for each type of service? Typically, your insurance card will usually tell you what the different amounts are (ie: $30 specialist, $20 PCP, $50 urgent care, $100 ER, etc.).
  2. Know WHO’s covered. The worst thing a person with insurance can do is not pay attention to the doctors that are or aren’t within their network. So for example, let’s say you have to see a Rheumatologist. Your PCP says that Dr. Smith is a great guy, gives you the number, and so of course, you get the next available appointment because you trust your PCP. I don’t care how great this Dr. Smith is – if he does not participate with your insurance plan, do not go see Dr. Smith (unless you can afford it. And I mean REALLY afford it. Because it’s never just a fee for the MD. You’ll get zapped for the visit, the Medical Assistant taking vital signs, bloodwork, and god forbid you have to go to the bathroom, there’s another $100 for toilet paper. Some places also charge a “facility fee” but I’ll talk about that later.) The bottom line is that your PCP is not going to pay your medical bills, and Dr. Smith isn’t doling it out for free (or this post wouldn’t exist), so make smart decisions about the providers you choose. Typically, insurance companies have some sort of resource for letting their subscribers know who is/isn’t in-network, but the best way to confirm this information is to call a specific doctor’s office and ask them  if they accept your insurance before you make the appointment.
  3. Know how to read your bills. You ever get a bill in the mail from a doctor pretty soon after the appointment, and it says you owe something crazy like $500 dollars for the office visit? “But wait, I paid my copay to the idiot who didn’t make eye-contact in the office, and I confirmed that the doctor accepts my insurance. What gives?” Well first of all, trust your gut. ALWAYS trust your gut. If you’ve done your due diligence and you know WHAT and WHO is covered, you absolutely, 100 percent, without-a-doubt should question why you have a monster bill. One tip that I can give you is that since so many medical facilities have become automated with their billing processes, sometimes the computer does a better job than it should, which ends up causing some problems. Basically, medical centers pay millions (sometimes more) to install computer programs into their process which automatically send out notices to patients when bills are outstanding on their account. But since the computer doesn’t have an actual brain, all it’s conditioned to “know” is that there is money unpaid, and a bill is printed and sent out to the patient. The real issue, however, is that insurance companies sometimes take a month or two (or more) to respond to a medical claim when it is submitted by the doctor’s office. So let’s say you saw a doctor on June 1st, and the claim was submitted to the insurance company on June 5th. On June 20th, there might not be a response from the insurance company yet, so rather than your balance being covered, the balance gets sent to you (which is no mistake, since you typically sign a waiver at the beginning of your visit, swearing to give limbs and children and vital organs if the insurance denies to cough up the dough.) BUT,  since you now know this information after reading this post, what you can do is call the number on the bill, and what you will usually find out is what I just mentioned. You will typically be able to discard the bill, or at least do nothing with it immediately, because until the insurance company has paid its portion, the balance is not yours. As I said earlier, the portion varies from coverage plan to coverage plan, but if you have insurance, SOMETHING should be covered. Once the insurance responds, you’ll usually get an updated balance from the doctor’s office, and at that point, it’s reasonable to panic. But not a second before.
  4. If something doesn’t seem right, ASK QUESTIONS. Since I have had the unfortunate experience of taking many ambulance rides in my adult life, I am familiar with the fact that it is common for the EMS workers to not gather insurance information, because let’s face it – what patient is riding in the back of an ambulance just to give it a whirl? Most people in that situation are very sick, debilitated, traumatized and in some cases, unconscious. I don’t know about you, but I’m not usually very valuable when I’m not conscious. As a result, the ambulance company gets the basic demographics from the patient’s ID and sends them a “get well, soon” present, and in my case last week, it was in the form of a bill for $978. Since it took so long for them to find me, a collections agency was asked to step in and help, and when I spoke to the woman managing my case, she stated, and I quote, that “this was the bill after the insurance paid it’s portion.” Because I’m not an idiot, I asked her why the insurance denied my claim. She said she didn’t have access to that information. “Well, that’s interesting,” I thought, because how could she know that this was really the amount I owed if she had no access to the explanation of benefits? When I asked her the same questions, she said that I could call the insurance company myself and figure it out. Which I did. And do you know what I found out? I didn’t owe $978 or anything close to it, because my insurance company confirmed that they had no claim on file for the date of service in question, which means I was being billed for the entire, insurance-untouched amount. I avoided paying almost $1000 just because I knew enough to ask questions and trust my gut. How many people out there know enough to do the same?
  5. Don’t be afraid to follow-up with your doctor’s office about charges. Regular office visits, for the most part, can be relatively straight-forward when billing is concerned. The problem sort of arises when you are having something out of the norm added to the mix, like an in-office procedure (ie: a scope at an ENT’s office) or a surgery you have to go to the OR for. One thing that I’ve seen happen many times (and have had happen to me, unfortunately) is when patients are scheduled for surgery and require an insurance prior-authorization (which is sort of a soft promise from the insurance company that they might, just might, pay for some or all of your surgical procedure)  and you either find out last minute that the office didn’t obtain the authorization so your surgery is cancelled (better case) or they didn’t obtain the authorization and you had your surgery and just like that, you owe a billion dollars to the hospital (worse case). The second scenario very rarely happens because most operating rooms will cancel a procedure if they have no evidence of ever getting paid, but you better believe that when it does happen, the only fingers that are pointing will be pointing in the direction of the patient. Because in general, the expectation is that the patient knows the process and knows when to speak up when it’s not adhered to. It’s unfortunate, but it’s the truth, and it’s why I always say you have to be your own patient advocate. So if you have anything coming up and you aren’t sure of what your financial responsibility is, ask questions, talk to your insurance company, and don’t be afraid to be the squeaky wheel, because it sure beats being in the car when the tires fall off.

For those who DON’T have insurance (and other tips):

  1. Read the forms you are signing. This is a tip that I have as a result of working at my current job. As some of you might know, I have had a career in healthcare operations management for about 10 years. This means that while I have had the priceless opportunity of weighing-in on patient care matters and implementing ways to make things better, I have also had access to the ugly insides of this industry, and at times, have been expected to carry-out policies that I don’t necessarily agree with. I think I have done a good job fighting to keep my immediate situation honest and ethical, but there’s a bigger picture, and no matter which way you spin it, that picture is green. In my current role, I have worked closely with the patient relations department, and have learned a lot about how to handle patient complaints and grievances. One of the most common pieces of feedback that I’ve received in the last 3 years has been about getting billed for charges that patients didn’t know existed. Among these mystical bills is called a “facility fee,” where a specific type of facility (specifically, an Article 28 site) can charge extra, because the patient has certain conveniences in that type of site that a regular outpatient private practice medical office wouldn’t be able to provide, like everything being in one place (infusion floors, radiology, and social work all being in the same building as your doctor, for example). It’s sort of like the patient is going to a mini hospital, and this type of site has very specific guidelines that they need to follow according to the department of health, like being within a certain radius of a full-fledged hospital, or always having an ambulance parked out front in case of an emergency. Since this fee was relatively new in the beginning, leadership provided some leniency when patients would complain, and maybe a percentage of what they owed would have been reduced. But over time, as the complaints became more frequent, it caused the institution to be more creative in communicating this policy to patients, and one of the ways in which that happened was to create a form that patients sign when they arrive for their appointments. As time moved on, when patients would complain about the fee, if they had a signed form on file in their medical record, they had no leg to stand on. It didn’t matter if that patient didn’t speak English or if the importance of the form wasn’t communicated well-enough by the staff, let alone the patient being distracted by whatever illness they are battling. If the signature was on the page, the bill was theirs. So just keep in mind that you are asked to sign things for a reason, and usually that reason is so you have no defense.
  2. Know who you’re speaking with. Whether it’s the person in the office  who answered the phone or the representative at the insurance company – get names. Get names, get names, get names. This has always been important, but I was on the phone with a collections agency the other day (with the same winner I mentioned above), and she used that age-old saying of, “it’ll be your word against theirs.” Think about this for a second. This is a person who makes her living harassing sick people for money they probably don’t have, and if that wasn’t bad enough, she had to throw in some aggressive zinger to make me feel shorter than I already am. My word against theirs? Last time I checked, I was the one who called them about the money I owed, and I was also the one who figured out that the information she was providing me was way off. I know I’m flaky and have a lot going on, but neither of those sentiments implies I’m some half-wit that doesn’t do my due diligence. Yet, because I didn’t have the name of someone (I should have just made it up, honestly…), none of my efforts would matter because when you owe money, your doctor might as well be in the mob.
  3. Get health insurance. I’m not even trying to be funny with this one. There are so many options out there now for people who are unemployed or whose shitty employer doesn’t give a flying pig about their health. It doesn’t matter how healthy you are; everyone gets sick, and when it’s something bad, you never see it coming. Depending on your financial situation, you could be a candidate for Medicaid, or if not, the Affordable Care Act options have grown tremendously. Many big-name private insurance companies partner with the ACA and offer several options for those who need help. There are different levels of coverage based off of what you can afford, so at the very least, become educated on what’s out there before you just submit to a lifetime of debt or living in a bubble.


So that’s sort of a snapshot into the ins and outs of how to stay on top of your medical bills. There is so much more to deal with than these few paragraphs could even begin to cover, but hopefully this will be a good jumpstart into the basic knowledge you need to start feeling confident about speaking up when things aren’t right.

Our world is filled with human error, don’t let it cost you your health.


(And as always, if you have any questions or need some help, feel free to email me at



Dear God

I got on my knees and prayed tonight. Like legitimately fell crashing down to the worse-off part of my body (after my heart, clearly), and sobbed into my mattress. And as I unloaded 31 years worth of you-name-it, my dog came up behind me and started sniffing my butt, and it occurred to me that he really is my spirit animal.

He likes assholes as much as I do.

I have had sort of a breakthrough the last few weeks. I’ve always been that person that pushes people around me to do what they love, because I figured out very young that the secret to life is to be as happy as much as humanly possible, yet some time ago, I seemed to have lost what that means for me. On the surface, I have maintained pretty well, but what does that really mean? I went to grad school immediately after college and plowed through, continued with a career that I’m passionate about and am connected to in a personal way, and have managed to stay above water enough to take care of myself physically and prioritize my physical health.

Notice that I just said, “physically” twice.

I mean I guess for someone who has a disease more rare than finding pierogies in trail mix, it probably is warranted that I care so much about my body. It’s not even in a superficial way (usually…), it’s more about the fact that it hurts to do basic things, and in a world where you’re nothing if not “normal”, I just work at being able to grab groceries and get dressed for work.

But along with spending so much time not paying attention to your mental state comes the deterioration of it. I believe I’m quick-witted, motivated and determined, but it can feel daunting, even considering how much it really matters, to take time out of your already exhausting day to fix your life.

Fix. Your. Life.

It’s amazing how three little words can be so powerful when you put them against a white background, yes?

Let’s break that down for a second. First, I’ll tackle “fix” – fix? Like in what way? When it comes to your life, there are no instructions, there is no diagram of what the project looks like when you’re done, and it’s not like I can go into a hardware store and find a tool dedicated to this specific job. Fixing something requires a lot of moving parts, like identifying what’s wrong in the first place, what things would look like if they were OK, and finally, how to get from the former to the latter.

Then there’s the word, “your.” This one isn’t usually difficult for me because I have always naturally been a very compassionate and giving person. It’s kind of a strange imbalance because I really dislike being around people for extended periods of time, but I am abnormally interested in aspects of their lives. For example, some of the best starts to my day are when I’m in a cab with a driver who has had a particularly fascinating story. I like making people feel special by expressing a real desire to learn about them. But does that mean I want to spend time in a room full of people and interact with them for hours on end? Not at all. But the 23 minutes it takes to get to work is just enough time for me to have a substantial conversation and dip out right at the point where enough’s enough.

The problem that I face with, “your” is when I AM the “your.” I don’t use the words “my” or “me” or “I” half as often as I should, and so much of what I’m committing my energy towards is building others up, pushing them to reach their potential, and focusing on how to get them there. But where am I in all of those scenarios? Not fixing or youring.

And then finally, there’s “life.”

The beauty of living alone is always having the ability to sit around my apartment and let my thoughts wander. I was enjoying this the other night when it occurred to me that life is actually really hard. People say, “life is hard” in one variation or another every day, but I’ve never really examined the truth behind it. I began to analyze it and all of these things started hovering around me, like how difficult it is to be healthy, stay healthy, find a job, let alone a job you like, make friends, keep friends, lose friends, earn money, invest money, invest in relationships, heal from relationships, etc. And then I thought about juggling it all in the air at one time, trying to figure out the right percentage of each that warrants your attention in a way that doesn’t screw up the entire equation.

And even if you are lucky enough to figure out how to successfully accomplish the list above and end up with a reasonable life, “reasonable” isn’t “great” and sometimes it isn’t even “good.” It’s just the result of things falling into place, in whatever spot they land, usually without your control or consent. Like right now, I live in Manhattan with my dog and I go to work every day. I could have moved to NJ or Long Island – I just wanted to be closer to my family when I made that decision. I didn’t go out and buy a dog or rescue one from a shelter – I decided to help out a friend, which turned into me acquiring a new pet. And the career I have was a result of getting a job after college that made it possible to pay my rent. I ended up loving what I was doing and I still stand by that, but being good at and passionate about something are much different than doing something every day that truly gets you jazzed. I didn’t intentionally go out into the world looking for work in healthcare. It’s the job I got. The career sort of chose me.

Since I started to realize after being hospitalized and almost getting evicted this year that I wasn’t doing much more than getting by, I decided to make a conscious effort to try to break down the things that make me happy, and more than that, bring me joy. I’ll admit, when I started on this journey, I don’t think I even realized that there was a difference between the two, but after hitting some sweet spots with some of the choices I’ve made, it’s become more apparent to me that the two ideas are miles apart.

I think happiness can be a few different things. It can be perception from what’s learned as being “happy”, like a kid growing up in a home with a lot of things vs. a lot of people, or scrolling through Instagram pictures that exist on everyone’s pages and comparing what your life looks like vs. what someone else’s looks like. It can also be fear-based, which is what I experience, because I’ve had so many bad things happen to me in my life that I feel like if I’m not grateful for days that are arguably average, I’ll be struck with days that are bad, and wish I had appreciated things differently . So I often associate consistency or lack of difficulty with happiness, because in my mind, it still beats the alternative.

Finally, I think there is true happiness, but I think the real feeling behind this last version is motivated by joy more than anything else. To me, joy is what you feel when you are experiencing something that is so undeniably you, like riding a roller coaster feels to thrill-seekers, or when a green thumb sees the beautiful garden blooming that she spent hours planting. I imagine it’s the feeling tattoo-enthusiasts get when they get new ink, and maybe the feeling a fisherman has when he feels something tugging on his line (and also when he catches a fish, HO!)

But I digress…

The way I am trying to think about it is by picturing a board of buttons behind my chest wall that exists, where each button represents something different. Something magical. Like “joy buttons” that get pressed when I do something that warms my soul and radiates comfort and excitement throughout my body. Playing the drums again has given me a glow that I haven’t seen on my face since the “Bottle of Wine for Breakfast” days after my divorce. It’s something my Dad says he hears in my voice over the phone, and I can tell by the way I’m smiling when I watch the playbacks of my videos that it’s coming from my stomach, not from my head.

I think the best way I can explain what I’m saying is that when you’re happy, going through the motions and thinking about a state of mind, the smile is being pulled from your mouth upwards by your frame of reference about what happiness is. Joy, on the other hand, is when you feel so elated that it explodes from within you and pushes the smile up from from your gut to your mouth. Happiness, like the analogy, feels more forced, while Joy is there to provide a good foundation.

Now, with all of this said, it occurred to me that if I have 8 buttons on this internal grid and just one of them can make me feel such delight, imagine the gratification and pleasure I’d feel if I had them all tagged with something special. What if every time I opened my eyes in the morning, there was a way to push at least 4 of them before even starting my day? Or better yet, is it possible to have them all pushed at the same time? I can’t say I know that answer, but I DO know that trying to accomplish that sounds way more rewarding than settling for being happy in a way that’s safe and socially suggested.

Life can be many things. But one thing it isn’t is pre-determined. You can be dealt a bad hand and choose to trade your cards in for some new ones. Or you can survive with what you have and hope for the best. Either way, both options start with “you”, and the first step to creating the life you want is understanding that it will be your decisions that ultimately paint your picture into a reality.

Don’t forget to add your happy trees.




On Fear

never be afraid to fall apart

Honey child, this post is about to be served two-ways. We are going to go from the angle of taking a risk that has the potential to blow up in your face, and also the direction of having the guts to walk away from something that you know will cause some serious heartache. If you haven’t figured it out by now, both outcomes could leave us in a broken mess on the floor, but when talking about life and personal growth, that can be really hard to avoid.

Hope you’re hungry.

Let’s start off by discussing why this quote spoke to me in the first place. Lately (this year…), I’ve noticed that a lot of my decisions have been dictated by fear. But different than most “fears,” I’m not afraid of failure in the sense that one would fail at a new job or hobby. I have pushed through monthly chemotherapy infusions for my chronic illness, applied myself to challenges at work, and held on strong with my weekly personal training workouts, even when I just wanted to sleep until tomorrow. Where I haven’t been able to really gain stability has been in regards to challenges of the heart.

Failure to “fall apart” can manifest in many different ways. First of all, let’s say you’re in a situation where you find someone who you connect with in a way that you haven’t found in a really long time. The back and forth is easy, you make each other laugh, you understand each other intellectually and you motivate and support one another to achieve greatness. But both of you aren’t whole. One person is carrying the other along, hoping it’s enough to bring you both up to speed. Because one of you cares so deeply about the other,. you start to overlook basic needs, a respect level, and before you know it, you’re so far gone you have no idea how to get out. The red flags are everywhere, but there’s progress, and when you’re happy, you’re a “this doesn’t get any better” kind of happy. You want to jump in, dive in, head first, even though there are sharks in the water. Wait, sharks? Did somebody say sharks? Yes, sharks. But you can handle sharks, right? Just don’t think about it. You’re a strong swimmer. And if you can just swim to the other side of the pool without getting eaten alive, you could be the happiest person you’ve ever been in your entire life. But what if you don’t make it? What if you decide to go for it and you make it seconds to the finish line before getting swallowed by the first shark you snuck past when you got into the water? Are you brave for trying, or are you just insanely stupid for thinking you could just ignore the warning signs that were there right from the start?

When it comes to this scenario, the issue I’m finding for myself is that I’m standing on the ladder, getting used to the water, going one step deeper at a time, and as soon as I see a shark, I jump right the hell out of the pool, screaming, “see! I told you this was dangerous!” But then the waters calm down, and my confidence comes back a little bit more, and maybe the next attempt brings me 1/4 of the way before spotting trouble, but I still revert back to what I know – ditching the progress I’ve made in the process. As it relates to the quote, I need to figure out if getting ripped to shreds is worth what’s waiting for me on the other side and commit to that, punching some sharks in the face.

And if not, the courage to….

For me, walking away would be equally scary and anxiety ridden. If you decide that you deserve more than putting yourself through hell in order to be “happy,” it’s also a decision you have to make and really own once you’ve made it. You can’t just say, “OK fuck this, I’m not going to deal with that BS” and keep looking back wondering if you could have made it across with all your limbs. Fear on this side of the coin is actually much louder for me, because there’s nothing more that I try to avoid than emotional pain. For whatever reason, I can handle getting the shit kicked out of me at the doctor’s office, but don’t try to watch me get over someone I care about. I’m not exactly sure what scares me the most about this, but I do know that it is this fear that prevents me from taking care of my heart the way that I should.

But think about all of the possibilities that could come from biting the bullet and really just walking away with your big girl pants on. Sure, it’ll hurt. Probably a lot. OK, maybe more than a lot. But what will you really be losing? Insecurity? Doubt? Disappointment? I think the key to this avenue is probably really focusing on that “big picture” people like to reference so often. Scenario one is likely to be a little more tuned-in to instant gratification. “I’m not ready to put myself through THAT level of pain, so I’m just going to continue to hurt myself in doses at THIS level.” But maybe we can just rip off the band-aid and replace it with a clean one. Really let the wound get exposed and cleaned up and start to heal in a healthy way – one that will certainly take time, but one that has a chance nonetheless. 

So which will it be? Just go for it? Really commit to just going into war, battlewounds and all, maybe not even arriving on the other side with a heart left to beat with? Or will you be strong enough to realize that when it’s right, you won’t be the only one fighting off the sharks (if there are any). You should never have to prove anything but love, and love should not hurt like this. One day I’ll be able to take my own advice, and you will be nothing but my muse. I’m ready to fall apart.

Will you catch me?


physical touch quote

Wouldn’t it be great if it were just this easy? If those whose immune systems didn’t know how to behave could just get some good old-fashioned TLC and call it a day? No steroids, no endless explanations to the bosses that never seem to get it, no monthly infusions? I have to say, I saw this quote and I was pretty mindblown at the thought.

But then I started really thinking. And maybe finding the alternative isn’t easier at all.

A few years ago I got divorced, and in talking to one of my friends, it occurred to me that one of the worst parts of leaving a 7-year relationship was getting used to sleeping in a queen-sized bed alone. There’s something physically uncomfortable about regular human touch being ripped from your life, and it’s something I started chasing immediately (in all the wrong places). While it probably took me 6 months or a year for that to feel less strange, it’s still an anomaly to me.

I learned about this approach to becoming my “whole self” by this theory I read in a book a while back, and it’s a method I’ve tried to apply to my life ever since. The general idea is to think of owning a pizza shop. It happens to be the pizza shop of all pizza shops, with the best pizza, with an unlimited supply, and it’s free. Now, if someome came to your house and knocked on your door, saying, “hey, I have the BEST pizza on the planet – just do whatever I want and I’ll give you some…” how would you respond? Would you run laps around the living room? Give him your new pair of shoes? Pay his rent? Even more, would you sacrifice parts of who you are, emotionally, for the pizza this person was offering? Of course you wouldn’t, because as I mentioned, you already have an endless quantity of the best motherfuckin’ pizza on the motherfuckin’ planet. You’d say, “No, I’m really good, thanks. I got my OWN pizza. Keep it moving.” :::snap:::

But what if you didn’t have that pizza shop? What if you hadn’t eaten in a week and you answered the door really fucking hungry? Now the circumstance has changed. You no longer have the upper hand, and you’d be inclined to do whatever was asked of you, because you weren’t able to provide yourself with what was being offered.

So if you were to apply that analogy to relationships, you can either be answering the door as a boss-ass-bitch, providing yourself with everything you need, so no one else could be used to fill your voids (read: make you happy), or you can have holes in your happiness, leaving yourself room to let other people break you down in order to survive. With this idea in mind, I spent the next few years trying to figure out where I wasn’t “complete.” I discovered that I’m independent, resilient, and educated. I have a fulfilling career and can provide for myself financially better than many people my age can. My healthy lifestyle is on point, I can cook, I speak a few languages, and I know my way around the city I live in. But there was always one piece of my life that I was never able to figure out.

I know how to make myself happy. In fact, every once in a while I’ll throw caution to the wind (ignore my bank account balance) and have a “Becky day.” This usually involves getting my nails and/or hair done, maybe adding a few cute pieces to my wardrobe, stopping at Starbucks for something sweet, and dancing around my apartment while I wait for Seamless to deliver me something I shouldn’t be eating. But the mystery for me remains: how do we re-create human touch? How do I show myself affection? Sex I can figure (finger) out, but I can’t hold myself in bed or rub my own back. I can’t kiss my neck or play with my hair. I’m not even trying to be a smart-ass; this is something that has tortured me for the longest time because I know for a fact that it’s this one missing fucking piece that keeps me at a disadvantage. And while I do believe that I’ve gotten significantly better at determining when someone is worth keeping around (Lord, have I…), I am scarred so badly from my past and so accustomed to going it alone that the thought of becoming the kind of close to someone again in a way that I really want absolutely terrifies me, because with pleasure comes the risk of loss, and pain, and pain.

And pain.

And so after reading the quote above, I wonder if all of us “chronic illies” are even more drawn to intimacy because of the emotional crosses we bear every second of every day. I’m not sure about everyone else, but I can tell you that for me, it’s not even just about being touched. It’s also about having someone around that matters to give it back to. I’ve always said that being sick makes me a compassionate person, and it’s here especially that this is true. I love loving. I know that when I touch someone, I have the ability of telling them how important they are without saying it with words. I don’t just touch with my hands, I touch with my mind. I think about how I want to be touched, and how the person I’m touching deserves to be touched. And all of the stress of my day seems to just bleed out when I have someone to connect to like that.

… which is so much better than connecting to an IV line.

Chronically Becky

For as long as I can remember, writing has always been my therapy. I’m not really sure why it started or how old I was when it did, but I think it had something to do with having a lot going on at such a young age and not knowing any other outlet to express what I was dealing with, since looking to my left and right, there was no one I could relate to. For those of you who are only just meeting me, I was born with quite the unique auto-immune disease. It wasn’t really determined that anything was wrong for the first year or so of my life, because the way my parents figured out I was in pain was by the way I screamed during diaper changes. I think there was a strong component of screaming generally in just about everything I did (not unlike me at 30 years old…), and then when I wasn’t walking with the rest of the kids my age, I was evaluated and misdiagnosed as having JRA (Juvenile Rheumatoid Arthritis). I had a Rheumatologist at the time who wanted to give me gold shots, which thankfully scared the shit out of my parents, and after getting a second opinion, I was diagnosed with the disease I called myself for the next 25 years: Sarcoidosis.

If you are reading all of this and thinking, “who cares what the fuck she has – these conditions are hard to pronounce and I’ve never heard of them, anyway,” I have to say that you aren’t so far off from the way I was treated for most of my life by hundreds of doctors I had the “pleasure” of meeting. I spent many days sitting in doctors offices, getting poked and prodded and put on display at teaching hospitals for residents and students to gawk over. It wasn’t until I was about 26 that I got my last (and hopefully, final) diagnosis, which is known as “Blau Syndrome”, which is really just a fancy way of saying, “rheumatologically, you never had a chance.”

The way my medical condition and I “hang” is basically by planning out every second of every day in every way possible; you know, so I can be a normal spontaneous individual. I have arthritis in every joint in my body, degenerative osteoarthritis in pretty important spots like my knees, hips and spine, orthopedic deformities (which I actually think are unrelated and just an added bonus to all the fun…), and eye disease (Uveitis) to round things out. The biggest problem I face is managing the inflammation that is caused as of a result of the arthritis, and when you have it every place you possibly can in the machine you’re living in, it can be pretty difficult to figure out how to how to make it through the day successfully, let alone accomplishing basic tasks like getting ready for work or washing dishes.

There are many layers to my chronic illness, and as a result, many layers to me. Rather than sit here for the next 45 hours and type out a rough history of the craziness I’ve been through, I really just meant this post to be a mic check, if you will. You know, to see if this thing is on and if anyone is interested in staying for the live show. It’s more in my nature to reference specific events in my life as they relate to how I’m feeling on a certain day or how I can tie them into a point I’m trying to make. It is my sincere hope that this blog provides some source of comfort for those who have been sick their whole lives or recently diagnosed alike, and for those who aren’t sick, to just really consider this: waking up every day with an illness that won’t ever go away was certainly not my choice and is not the choice of others who are the same position. I do not need you to feel bad. I do not need pity. I am a strong, capable, grateful young woman who is appreciative of every good thing I have. But compassion seems to be a lost quality in many people I meet. All I ever want is to be understood.

But will you take the time?