“Coming Out”

This is something I’ve grappled with ever since my chronic illness became this thing that really started screwing up my for lack of a better word “normal” life. Whenever I find myself in a new situation or predicament, especially professionally, at some point it always happens that I have to come out as chronically ill (borrowing the phrase from lgbtqa+ hope no one is mad). I don’t just get to be Alex that frizzy haired over caffeinated ESL teacher with all the clogs. If I need more than 3 consecutive sick days I have to disclose this deeply personal aspect of my identity to complete strangers. I am chronically ill, I am living with a disability, and yes I know I don’t look like it.

Every new doc, new job, new friend, new whatever I have to rehash the details. Sure I have my medical history monologue perfected at this point for new docs, but that’s no where near the feeling I’m talking about. It’s almost a feeling of panic like I’ve been caught trying to pretend everything is fine and dandy: that I don’t have this huge secret. I worry and worry that things are going to flare up or something is going to get worse or I’ll have a bad reaction at work or out with new friends . That I’ll get caught and have to confess that I’m oh yeah I actually have multiple somewhat rare and invisible illnesses. It’s casual.

As much as I love to be so candid about some of my experience with chronic illness for my own entertainment, the reality of the situation is that, Yes, I am dealing with some shit and it affects every aspect of my life and it’s really fucking difficult and emotional and all the other things. It’s easy enough to tell your boss you need the afternoon for a doctors appointment, but how do you go about even explaining that you need to do a wash out of all your meds for invasive testing over the course of two weeks and you don’t have a fucking clue how that’s gonna go down. “People” don’t really take two weeks off for doctors appointments, but as anyone in the rare disease gang can tell you sometimes between prep and the falllout that’s just how long it’s going to take to return to again that word “normal.”

So here I am sharing my 10yr+ medical history with yet another boss because shit just can’t go smoothly can it? I have to go into the intricacies of my diagnoses, what an auto immune disease is, the fact that MCAS is quite literally unpredictable, that no I’m not making any of this up, and the fact I am barely holding my shit together. Lest we not forget folks: I still don’t look sick…lolz.

I think of this process as a “coming out” of sorts because you clue people in to having a chronic illness, an invisible disability some tend to re-classify you. I mean throw the word disability around in the work-place and everyone freaks the fuck out and needs to call HR, before talking to you ever. And with coworkers, the greetings now are always a “how are you feeling?”…or subtle back up plans made without you to be in place “just in case” It creates this cloud of “sick” stigma around so many things that’s often beyond unnecessary, all stemming from shit you probably didn’t even want to share in the first place.

It’s tricky wavering between these two poles of full disclosure this is what life is like being chronically ill, or maintaining the right to keep private what for many is a deeply personal struggle. Some days I want to say “fuck this, guess what I take 28+ meds a day, have had more docs than boyfriends, and don’t have time for your shit,” whereas I have other days when I want to throw my laptop at a cabinet of medical records and crawl under the covers forever because I have to prove the legitimacy of my disability to a bunch of HR assholes* and just scream, “you don’t know my life!”

So….yeah it’s a balance I guess. I’m definitely working on it…that and the shouting/cursing.

*No offense to anyone in Human Resources you are the real mvps most of the time

“I feel like I’m in a Relationship with your answering machine.”

This remark by none other than the polarizing Ross Geller of NBC’s Friends, is not only so 90’s, but it also perfectly describes the relationship I, and basically anyone trying to get an appointment in specialized medicine, probably have with at least one of our physicians’ offices. When I think about the collective amount of time I’ve spent on hold, at the mercy of the scheduling people, or the billing people, or the insurance people it takes me to a bad place. Like a fuck this I’m gonna eat a pack of Oreos with ice cream, and get hives, then pick at the hives until I look like a leper, kind of place.

My most recent one sided relationship happens to be with my neurologist who needs to see me before refilling meds, funny part is her next appointment isn’t for…wait for it…drum roll…almost 5 months! So as one might imagine this is a teeeeny bit problematic as without said meds my brain and central nervous system misbehave quite a bit. After a brief hold of 55 mins (under 60 is brief) I explained the time sensitive nature of the situation and was advised to call back daily to see if there are any cancellations. Cool cool cool cool cool. So just like Ross (in yet another relationship blunder) I again find myself asking: What do I do now?

Before I continue I feel like it’s important I recognize two things: the first is that I know healthcare administrative staff are doing their best, it’s not their fault as so many are working for systems that aren’t patient centered. The second is I also recognize I’m not the only patient, there are so many others suffering this same bullshit which only makes me more upset when I’m on hold for an hour because that means someone else is on hold for two hours. It’s bullshit man.

Being chronically ill starts to become a full time job when the only solution you’re offered is to spend an hour on hold every day to maybe be able to snag a cancellation. Lest we forget we’re doing this on top of already feeling like garbage, managing our meds, and all the other regular adult human shit like paying rent and feeding yourself. The “solution” I was offered doesn’t feel very solution-y to me, but at the moment it’s all we got. Unfortunately I can’t take a break from my neurologist a la Ross & Rachel. I can at the very least rewatch Friends while I’m on hold and thank my lucky stars I have unlimited calling on my cellular plan.

Why Weezy?

At this point some of you may have become curious or even confused with regards to the name of my blog, asking yourself:

  • WTF does the illest even mean?
  • Wait…isn’t that like a rap lyric?
  • Hopefully today’s post clears up some of your curiosities, and you can understand the method behind the madness.

    “[Bitch] I’m ill, not sick”, was first uttered by Lil Wayne or Weezy, in the song A Milli, on my personal favorite album Tha Carter III. (Actually it was motherfucker, but I’m trying to tone it down just a touch). This line for whatever reason has always resonated with me.
    When I think of sick, I think of weak, helpless, and needy. I also think of acute problems, tissues, cold medicine, “get well” balloons. None of those things match what it really means to be chronically ill. For a person with a chronic illness a “get well soon” can feel like a slap in the face or punch in gut. It’s at that moment I want to say “Bitch, I’m ill not sick.”
    Everyone finds wisdom in different pockets of their lives, and for me Lil Wayne really did say it best, being chronically ill is so more than being sick. So I’m just out here trying to be the illest, to thrive where I can. It almost feels like one of those reclaiming the word used against you kinda things. And whatever your views on Lil Wayne and Young Money as a whole may be, it sure as hell is a nice change of pace from the royal bummer that is being sick.

    Find my titular muse here.

    Russian Roulette: Mast Cell Edition

    So if you’ve read my saga of a full personal bio you know this, if not SPOILER ALERT, but Mast Cell Activation Syndrome/Mastocytosis are among my principal diagnosis and play a fairly important role in keeping me nice and ill. A huge part of managing this disease is knowing and avoiding your triggers, which makes sense as your mast cells are already doing crazy ass shit on their own, then you throw other histamines in there and it’s a clusterfuck. Very technical language I know, I’m basically a doctor.

    img_1354-1
    SOS from an Uber, perfumes are one of my biggest triggers. Twas just about to barf just moments after this snap.

    The fun part is that virtually anything can be a trigger, environmental changes, food, stress, you name it, we react to it. One might think however that once a trigger was discovered, say dairy for example, you could be like adios queso! Then todo bien, but one would be wrong. The thing that makes MCAS such a sneaky bitch is you may react to something you’ve historically never reacted to before, and vice versa. If I had a dollar for all the shit I’ve had to throw away because it spontaneously started to make me itchy after days or even months of being hunky dory…I could probably quit my second job.

    Alas, this is the essence of Russian Roulette: Mast Cell Edition. Never know if that barrel is empty or filled with hives, tachycardia, and oh so much more. It does however lend hope to the thought one day I may be able to eat Flamin Hot Cheetos again without getting hives all over my body. Silver linings ya know?

    Also quick footnote on #triggered, in the photo it is quite literal in a sense not referring to its definition in a mental health capacity, if you use the term in jest give this a read. Give respect, get respect.