Sick of Being “Sick” in the Workplace

Tonight, I literally cried over spilt milk.

It’s something I try to avoid, since when you’re sick, unfortunate shit happens metaphorically 100 times a day. But tonight, as I was taking a heated up eggnog from Starbucks out of the microwave, I started to burn my hand, and in an effort to not drop it altogether, I held onto it longer than I should have and ended up releasing my grip far enough away from the floor that it left a festive-smelling mess all over my carpet.

Even though I can be pretty closed off and tough when I’m hit with life’s trials, I had hit a breaking point after the reality of my life really came to an ugly head this week, and the only thing I could even fathom doing in the moment, as my dog licked up the disaster like he had just won the jackpot, was sob mindlessly in my kitchen over a relatively benign event.

This is a pretty familiar reaction for me. I tend to push through much worse things because I’m used to it, and then something far less traumatic will occur and it just sends me right over the edge. You’d think someone came into my apartment and chopped the tops off of my Christmas trees (yes, trees plural, because I love decorating so much that when I was faced with 2 trees I liked in Michaels last year, I decided to take them both home and I’ve loved on them ever since.)

This week was also a set of high highs and low lows. My brother got married last weekend, and seeing so much of my family and some childhood friends at one time really brought out a side of me that had been dormant for a while. I live alone in NYC, which is normally OK because people have a tendency of bugging the shit out of me. But when you don’t interact with those that you care about, and most importantly, care about you, it’s easy to forget how great you are.

I’d like to think that I am confident in myself and what I have to offer other people, but the low that really ripped me out of wedding weekend mode was another occurence of workplace discrimination. It’s something I’ve talked about from time to time in my writing and also on my IG account (@chronicmotivation), and I wish I could say that having experienced it in the past makes each time easier, but it just doesn’t.

When you wake up every day in pain, exhausted, unable to walk well or move fast enough for a shower to be feasible before your commute, it can be really difficult to hang onto a job. For better or for worse, I’ve done this for a really long time, nearly 13 years of that time being committed to my career working in hospital operations management. I like to tell my followers that working can be really healing for the chronically ill, because when you live in a society that puts the value of a person mostly on how much money they make or have, it can be pretty easy to feel worthless when you aren’t physically able to punch a 9-5 clock.

And when you ARE well enough to consider something full-time, I tend to think that it has to be a job that you are overly passionate about, because it has to be enough for you to push through the physcal discomfort and the political bullshit that comes along with being a sick person in the workplace .

Calling it Bullshit is being kind.

I have never felt entitled. I have never put my hand out for something I haven’t earned, and I have never used my illness as a card to advance or to overlook work that I haven’t gotten done. And all of that has worked out pretty well for my employers, because I don’t use a quarter of FMLA time that I’m approved for, I take so much pride in helping other sick patients that I never call-out sick, and even when I am under the weather, I make sure that my job gets done, regardless.

So when I come back from having a great time in Boston and am motivated and excited about my life, and on day one I’m hit with learning that a position that I’ve earned 10 times over was handed to a less experienced, less educated coworker, the feeling of defeat is real. I have worked at my current hospital for 6 years, and this particular coworker was hired after me and has now been promoted twice, which is twice as many times as me.

When I asked a previous manager why I was passed over the first time, I was told that I had to “be there to do the job.” I of course followed up with questioning what I hadn’t sufficiently completed as an employee, which resulted in crickets, because I’ve never not done my work. He also told me to leave the institution I work for because I would never be promoted. Again, I was not offered a reason why. Since the manager who gave me that “advice” had already resigned and was on his way out, I figured I’d give my job the benefit of the doubt and I kept plugging along.

And then more weird stuff happened.

I had expressed interest in a project management job that my current manager previously posessed, and he told me that the position was already filled. Oddly enough, 2 years later, a new person was hired into the department, and during her orientation, one of the directors announced that it had been a lengthy search to fill… you guessed it… my manager’s old role.

About a year and a half ago, someone on my team resigned. HR had just come out with a new recruitment policy that required managers to share all open positions with their staff before posting it publicly, so the process would be transparent and fair. My manager sent an email asking us if we were interested in the position as it was, and none of us were, since it would have been a lateral move. A week later, I learned that he tapped my coworker on the shoulder, told him if he took it they’d make it worth his while, and he gained a new title, and with the promotion, a raise.

When I asked my manager why I was not considered, he told me that my coworker was due for a raise, that I made more money than him, and that he didn’t understand why I was upset because he felt he had been “accomodating” with my illness.

Question for all of you reading this: when was the last time you heard of employees only getting accomodations if they agreed to forego any and all interest in professional growth? When was the last time you heard about a sick person who decided to be sick, or who wanted to have to ask for accomodations? And finally, to my knowledge, workplace accomodations are not something that are to be given out of the kindness of a manager’s heart – they are legally required as long as the request is reasonable.

Just to be clear, because this is about to get worse: I have never asked for an accomodation. Not once. In fact, since I’ve been employed, my illness has ignorantly been overlooked on several occasions, including one of the most egregious decisions my manager made 2 years ago to move me out of my operations role because because they needed a project manager. Posting that position would have cost them at least a 6 figure salary, but I guess since they didn’t think I was “due for a raise” like my male, able-bodied coworker (…), I was TOLD I would be leaving behind the job I was hired for, and apparently, leaving behind the career path I had worked 10 years to develop. As such, I was moved to a different building and have been required to travel back and forth to various sites without any attempt to acknowledge the fact that as a physically disabled person, I now have an added expense paying for Ubers throughout the middle of the day just to accomplish the needs of my new position.

When it comes to my medical appointments, I will flex my work schedule or use my lunch break to run out so I never owe time, and I get my infusions on Saturdays to reduce my recovery time during the workweek. Additionally, all of the time that I DO take for infusion recoveries is time that I pay for. No one is doing me any favors by “allowing” me to use my sick and vacation time to pay for time off that has nothing to do with rest or relaxation, and they are certainly not doing me any favors when my paycheck is docked after I run out of the time I’ve used for those monthly treatments.

Which really begs the question: what EXACTLY is the accomodation? Would they try to write me up for the whopping 3 days a month I take off for Remicade (even though I’m violently ill for a week….)? On top of it being extremely difficult since I do have FMLA certification protecting me from that situation, it sounds pretty fucking grimy for a manager to take credit for threatening anything of the sort given the circumstance.

The moral of the story is that my illness and my work ethic are not mutually exclusive, and for a conversation about my career-path to have anything to do with my manager’s perceived support ,when I’ve done everything by the book, is wildly inappropriate.

It was at that moment that I realized an idea that I’ve referenced before, and is heartbreaking to say the least. Basically, if you are a great employee with no physical ailment and your presence at work is standard, you will be rewarded with a raise and a promotion. But if you are a great employee with an illness, even if you manage it in a way that has no negative impact on your work product, your reward is that your manager will continue to provide you the accomodating that you REQUIRE to function (and as I stated above, the accomodation that I don’t receive).

If you are a sick person in the workplace, regardless of how hard you work, you will never be starting at the same place as a non-sick coworker. The way I’ve experienced it, hard work is viewed as what’s “owed” for being a burden in a truly antiquated system. So even though I have done the same or more work than my peers, I look different, and I have different needs (which my job routinely fails to meet…), and so I am not considered for a non sick-person’s reward. I am just expected to be grateful to be allowed to work at all.

Fast forward to this past week. One of my coworkers resigned a month ago – she was in a higher role than me, also undeservedly, because she was hired a year after me, and with less experience and education (and before her probationary period was up…), she was moved into her role 3 years ago without it being posted. When I told my current manager about how terrible that was for me to endure, he told me that since it was before his time as my manager, there was nothing he could do but assure me that I would always be supported by him moving foward.

So when my coworker resigned and my mananger never mentioned it to me and the rest of our team, I had a bad feeling that history was about to repeat itself.

A few weeks went by, and I went away for a long weekend, and when I came back, I heard from a coworker that the position had been handed to the person I mentioned earlier – the same guy (ahem….) who was promoted last year into a job that was created just for him. So here I am again – being slighted for a job that I’ve worked desperately hard to move into, and with no real insight as to why.

When I had my weekly meeting with my manager on Friday, I told him I wanted to be considered for my coworker’s vacancy, since surely there was no way that what I had heard was true. He never announced the vacancy, and he never posted the position. And this time, he didn’t even send out the internal email required by Human Resources. When I told him of my interest, he started shifting nervously in his seat and told me he would be moving my coworker into the spot.

He told me we could talk about it on Monday since he had a meeting to go to, which I told him I felt necessary, since I am more senior and more educated than the person he gave the job to. I also reminded him that he didn’t communicate anything about the vacancy, and that I am very interested in learning what his reasons would be for disregarding hospital policy.

He mentioned again that I made more money than my peers (which I’m sure is barely true, and also, extremely tacky to hear). Also, what do my negotiation skills upon hire have to do with someone else’s inability to fight for the salary they want? And since that statement has been said several times now, does that just mean that I will never get a raise or promotion because they don’t want to pay me any more money? If that’s the case, what exactly am I working towards, anyway?

He said something under his breath about “fit”, which is also interesting since they had no problem throwing me into covering my coworker’s maternity leave for three months without warning. I was told on a Friday that she’d be leaving in 2 weeks, and when she had her baby on Monday, I was just expected to jump in and do the job. And lucky for them, I did… and I did it well.

So how is it that my performance evaluation, which I just received 2 weeks ago, was mostly highlighting my ability to manage 30 staff and 20 doctors in our busiest medical specialty (breast cancer) for 3 months with no hand-off or preparation? How is it that I get the most obnoxious projects and tasks to cover because I am the only one who can figure it out, but when an opportunity comes along to do just that, I am not the right “fit?”

I have held my tongue for a really long time because a) I’d like to think that hard work transcends workplace bias and b) I really need my job. But to be so blatantly disregarded when I know what I bring to the table, it destroyed me to my core. I applied for a bunch of jobs (obviously outside of my company), and I’ve thrown myself even more into the side projects I’ve been working on for the past few months, because if I’m being honest, I know that it’ll be no time for a new job to start treating me like shit like all of the rest of them have before.

This is an issue that needs to get the proper attention. In speaking with disability lawyers a few years ago, I learned that much of what’s happened to me during my career has been blatant discrimination, but it would be very difficult to prove. I would need to have any of the things said in writing or on a recording, and the fucked up part is that managers know when they are doing something wrong and are very careful not to document these decisions formally. And if I or anyone tried to pursue legal action on the basis of the experiences I’ve shared in this post, it would become public record. So if I won, maybe I’d get a year’s worth of a salary (but probably not) which would result in me needing to work again soon, and if I lost, I’d never get a job again anyway, because who is going to be interested in a candidate who has sued her employer?

It kind of reminds me of a conversation my mom and I had a few years ago. She’s almost exactly 30 years older than me, and she had gone back to school for her master’s degree. She had run into a weird scenario where even though she had been a nurse for 30 years and had more than enough knowledge in her field, hospitals started changing their requirements and young girls right out of college were getting jobs with zero experience because they were probably less expensive to hire. My mom didn’t want to give up, so she decided to go to graduate school, and when she wasn’t getting any job, I told her it was probably ageism. She naively stated that it couldn’t be ageism, because ageism is illegal. But I explained to her that no one was going to cite her age as the reason for not moving forward – I could simply dislike what someone was wearing to an interview or be a raging racist and decide to pass, and I could give Human Resources the reason that the person didn’t interview well or “wouldn’t be a good fit.”

There is no way to prove that foul play exists as long as a manager makes sure to use another excuse instead.

And that’s my problem. When it comes to employers not supporting my advancement, they’ll likely say that someone else was a better fit – when what they are really saying is “we don’t want to promote the sick girl.”

Well, enough is enough. Something needs to be said, and more importantly, something needs to be done. I encourage my social media community to work hard, and to push through their pain, and to try to find a job because of the benefits it can bring to emotional (and then sometimes, physical) health. And so many of my followers have sent me the kindest messges over the years, thanking me for helping them consider that path, or for reading their resumes, or editing cover letters, conducting mock interviews, and asking a million questions so they can find out what their passion is. Because of my prompting, a whole population of people have decided to go back to school and graduate, and others have applied for and been hired for jobs – and not just jobs for a paycheck – jobs that they care about and brings them joy.

But it’s all a scam. Unless you happen to find an employer who ACTUALLY cares about your well being and understands that a lot of the workplace “norms” are outdated and pointless, you will be busting your ass for nothing. You will hopefully receive fullfillment and satisfaction like I have for the years I’ve put in, but it’s a long hard fall when you realize that that’s where it stops. You will be training peers to be your superior, and you will be assigned all of the things that no one else wants to do. Because you should just feel lucky to be an employed sick person in general, you are not to have a voice about mistreatment in by the employer.

So with that, I will be meeting with my manager this week (or will I…?) and I have very little expectations about that conversation amounting to anything more than a diologue saturated with discrimination.

I will also be forging ahead with my life plans not relating to this job, and I can’t wait for the day where I’m on the Ellen show talking about whatever creative work made me a billionaire, happy to discuss that I made it there despite the unfair restrictions I faced as someone who is chronically ill in the workplace.

Have you or anyone else you know been discriminated against by an employer or during a job interview? How have you handled it? Feel free to leave your comments below.

All my best,

xoB

 

Dear, Lexi

Have you ever been nervous to meet a 6-year-old? It must sound absurd, especially coming from someone who is 34. But on August 26th of this year, I got the first-date jitters thinking about meeting Lexi Townsin, who as of that evening, was the first person I had ever met with Blau Syndrome.

“Will she like me?” “Will she be confused that her parents are excited to meet a stranger in NYC?” “Will she understand why meeting her will change my life?”

I often joke that kids tend to gravitate towards me, because at a “towering” 4’10”, they usually think I’m one of them. I’m immediately accepted into their world because we can have conversations at eye-level. And while meeting Lexi was a breath of fresh air because of how radiant she was, she was onto me. She knew I wasn’t a kid – not because of some unnatural intuition, but because she wasn’t completely a kid, either.

When I was growing up, my cousins used to make fun of me, because at family gatherings, rather than playing tag or Barbies, they would find me sitting with “the adults”, propped up next to my aunts and uncles, having conversations about life as though I had already lived it. But when you’re born with an incredibly rare disease like Blau Syndrome, you, for better or for worse, have already lived it… and a lot of it.

It would be impossible to suggest otherwise. When you have to experience adult-like scenarios like swallowing pills, taking eye drops, getting poked and prodded, going to countless doctors’ appointments, and waking up in the middle of the night for a special pancake breakfast because you have to fast for a hospital procedure, it almost makes more sense when a sick child reaches greatness earlier than most.

And Lexi surely did. Anyone that knew her was so fortunate to have been blessed with that gift. I only had the opportunity to spend a few short hours being captivated by her personality in-person, but since she overflowed with wit and sass, I left our meeting feeling lighter. She made me laugh. She knew the sweet look she could flash her parents when she wanted a meal they knew she wouldn’t be able to finish, which was proven as I watched her father snack on a larger-than-life portion of fish and chips while I spoke with them about all of the great work they’ve done for the diagnosis I shared with their daughter.

Most importantly, she had a voice. And not just the voice that knows how to speak up when something isn’t right, or that charms passersby on the sidewalk, selling lemonade for the foundation her parents created out of devotion to their child – she was also vulnerable, and kind, and knew how to express herself when she was scared, or in pain, or tired. She had learned so many hardships about life at such a young age, that it’s a wonder she had any joy left in her at all.

But that’s what speaks to Lexi’s spirit. Even though so much of who she was can be attributed to how she was raised by her amazing parents, it was always so evident that they felt they were the lucky ones, having a daughter whose laugh scared the clouds away each day. I think it’s pretty common to see siblings fight, especially at the ages that Lexi and her older brother, Felix were. But witnessing their bond, again, showed that her affect transcended any social norms that could be assumed of a 6 year-old.

After meeting Lexi, I had envisioned my future relationship with her. I pictured international phone calls when she was struggling to adjust, or confused about dating, or if she simply needed an ear when she had any concerns about life that I would have hopefully figured out by the time of her asking. I wanted to give her the understanding that I so desperately could have used at her age, and frankly, could use now. But most of all, I was excited to watch her grow. I decided that if someone so young was already such a bright light, how lucky the world would be to have her in it.

And it was.

Even though it’s an understatement to say that Lexi’s time on this earth was cut short pre-maturely, it’s pretty unbelievable to think about how many people felt who she was, even just by watching her videos. Social media can be a sterile place, but somehow, Lexi managed to break that barrier as well, with her touching attempts to raise awareness surrounding her circumstance.

I’m not sure why I’ve been afforded the opportunity to be granted more physical years than Lexi, and as I sit here, living with the same medical condition plaguing my body, the anger, and disappointment, and true heartbreak are overwhelming. During a time where not much makes sense in my life, she did. In a quick encounter a mile away from my apartment on a routine weeknight after work, she helped me understand why people don’t generally see my physical deformities the way I once saw them, and for the first time in a long time, I didn’t feel so alone.

It’s hard to reconcile why something so terrible had to happen to someone so special. Maybe we won’t. And I’ll refrain from saying the cliché thing, about how we can “learn” from Lexi’s passing, because I’m not yet in a place to accept that this is our reality, or that there is anything we can possibly gain from her absence that is of greater value than being able to get more time.

What I can say, however, is that for reasons that I’ll probably never know, I am still here, and I am still fighting this unfortunate illness, and I will do everything in my power to continue to forge ahead with the grace, and warmth, and valor that Lexi applied to her courageous daily fight being a patient with Blau Syndrome. And now, as I’m writing this from the “comfort” of a familiar Rheumatology waiting room, I’m thinking of Lexi. And even though the hole in my heart is great, I can picture her toothy grin cheering us on from wherever she is, and reminding us that while it might be difficult right now, tomorrow is only a day away.

xoB

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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

 

 

 

 

 

 

 

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?