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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21-Day “Beauty-Binge”

I haven’t felt like myself for a very long time. In fact, I’m not even sure anymore of what my “self” looks like at it’s core. There are pieces of me that have stayed intact because they are so crucial to my existence, like compassion and intrigue, but the rest just sort of feels like it’s been on auto-pilot.

A lot about being a sick person is doing things every day that you don’t physically and mentally feel like doing. It’s getting out of bed, bathing, contributing to society in some way (going to work or school, for example…), and it’s checking off items on a list that prevent you from failing at life completely. Do laundry. Pay rent. Feed the dog. Feed yourself. Even typing this out feels monotonous. And what I’ve learned is that you can go into a downward spiral quickly if you aren’t aware of how unintentional your habits have become.

When you are chronically ill, and these things that you don’t feel like doing still have to be done, there is a lot of energy that gets used just accomplishing these and other basic tasks. I have always had a theory that it takes more energy to do the things we don’t want to/feel like doing than things we want to do, because we also have to compensate for the lack of motivation that exists when a general interest or desire isn’t present to push you. So when we’re just getting by, and we’re trying to make it through each day, what happens to all of the expendible activities that we simply don’t have the energy to accomplish?

What happens to our joy?

It’s sad, but because I live alone in NYC, I very much depend on going to work each day so I can support myself. I don’t think that this is a different fact than other people who have to work to survive, but other people aren’t completely depleted just getting ready in the morning. For me, there are many days when I have to pick between going to work and taking a shower. Other people might argue that both are non-negotiable, but if you know that after you’ve hit a certain wall that nothing else will be possible, you have to prioritize the things that will immediately cause big problems, and that might come at the expense of things that seem unfathomable to put off.

So then as your health declines, you start to become a robot in a sense. You start to feel like everything is a race against time, trying to get the bare minimum done before your body closes shop for the day. And when you’re living in that mentality – survival mode or bust – it feels like anything “off the list” so to speak, feels like a luxury. It starts to feel like the things that you once loved are very much out of reach, as long as you want to stay afloat in the areas that truly require your attention.

But that’s no way to live your life, when there’s no “living” involved.

I have always had a pretty extreme personality. I’m usually either completely invested in something or it practically doesn’t exist. So when I started to go down this path of maximizing my time, other things were sacrificed that I couldn’t have anticipated in the very beginning. You figure that small things can be skipped, but small things add up.

So with that said, I decided I’m going to spend the next 3 weeks tackling a small piece of the puzzle. I’ve heard many times through the years that it takes 21 days to make or break a habit, so I will be spending that many days assigning some time to doing my hair, doing my makeup, and putting together an outfit that makes me excited to walk outside my front door. I want to feel put together. I want to feel approachable. I want to feel worthy of being seen.

At first pass, it might seem that this is a superficial challenge that I have set my eyes on. However, I think there is a lot to be said for how we present ourselves to others. I don’t think that a full face or big hair is the reason others should value us, but if we aren’t putting any effort into how we look every day, it could be perceived by others that we don’t value ourselves. And if we send the message that we don’t value ourselves, how can we expect others to think we have value?

This is basically a social experiment.

We have clothes in our closet that we reserve for special occasions – I would like each day in the coming weeks to be special. I also am interested to see if my committment to something so basic trickles into other aspects of my life – will I be encouraged to try new things, or be more social, or get to work on time, simply because looking nice on the outside makes me feel better on the inside?

I will be journaling about my experience and will be tracking things that are seemingly unrelated (i.e. my weight) – because my gut tells me that deciding to make my appearance a priority will open up new doors an opportunities for me, even if they are only benefits that I am able to see.

This mission that I am about to embark on is not about other people. It’s not about being attractive, and it’s not about pretending like I’m not sick every day.  In a way, it might remind others that even though I am sick every day, I’m worth spending time on. With this journey, my goals are pretty simple. I intend to live with intention. I want to find purpose on purpose. And I want to teach myself and others that I deserve to be loved by first loving myself.

Ultimately, there is absolutely nothing that I can lose by doing this. All I know is that I have no idea what else I’m supposed to do, other than to fake it until I make it. It’s a notion that I’ve tried in the past and in my recollection, has had a pretty high success rate. Also, I think it’s important to mention that for me, even though it will be physically daunting to accomplish this level of vanity, this is something that I’m actually interested in doing. I think it’s fun to play with makeup. I love my hair. And I also appreciate fashion. The only thing that I have left to do at this point is to do these things that I actually enjoy.

If other people are inspired by this and are feeling a bit lost in life like me, I hope it’s also understood that this is MY version of a “beauty binge.” I am not trying to perpetuate the idea that women are only beautiful if we have makeup on or that we have to be an “enhanced” version of ourselves to be valued in society. Beauty to someone else might mean drinking a ton of water to promote glowy skin, or it might mean sleeping more to prevent bags under the eyes. I only promote that we each determine what feeling beatiful looks like for each of us, and that we don’t discount the impact that ignoring that feeling has on other areas of our life.

So here goes, my dear friends.

All my best,

xoB

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.