Prove It

Many stores have responded to Covid-19 but putting in place special shopping times for community members that need a little extra consideration. Examples of those type of people being seniors, pregnant women, people with disabilities or otherwise immunocompromised. This is a solid thing businesses are doing that they don’t have to, and none of what I am about to say is in any way contrary to that sentiment. I am grateful for these accommodations because safety and sanity are my top priorities right now. With that, now let me tell you about my morning.

I needed to go to Costco. I try to have my husband go, but they were out of things we needed when he went, and when you have IBS and MCAS you just can’t risk running out of toilet paper and generic Benadryl. So I decided I’d venture out on a quiet Wednesday morning in hopes things would be in stock and not too crazy. From the minute I woke up I could feel my anxiety buzzing, even though I triple checked the website that it was the elderly AND disabled all I could think was, what if someone asks me why I’m there? what if they make me prove it?

About 90% of my illnesses manifest invisibly. I really only have a few symptoms that say HEY! Look at me! I’m sick! So knowing I would have to stand my ground in line while a bunch of old people stared at me like, wtf is she doing here? was stressing me out BIG TIME. I knew since it was a going to be upwards of 90 degrees I was going to bring my cane for stability, POTS related dizziness etc. Which sadly was the only thing I was kind of holding on to for peace of mind as some kind of symbol to say, I deserve to be here. Who is going to question the 27 year old with the cane?

But isn’t that kind of fucked when you think about it? I shouldn’t need some visual manifestation of illness or disability to prove to a bunch of strangers that I am in fact ill or disabled. I am just as fucking sick on days when I don’t need a mobility aid, my diagnoses do not magically change. There are also hella young people who are living disabled and chronically ill that don’t need mobility aids but very much need to shop during these special times for their safety, so that creates this issue of society wanting us to prove it. It’s the whole “But you don’t look sick” complex we battle against every day, or the “you’re too young for all those problems” line I’ve heard SO MANY TIMES, well you know what Ethel I have them so what the fuck now?

So here I am rolling up to Costco sweating balls, partly because I always am, and partly because of all this anxiety that I don’t look sick or disabled enough for the general public to accept me. I mean I am used to stares. We all are. We wore masks before Covid-19 was a thing, I use a mobility aid and am under 60. But let me tell you these Senior citizens were obvious AS FUCK. More obvious than my 10 year old students when I brought Sticky to school. Just validating all that anxiety, and I’m just trying to stand my ground, wobbly, but standing nonetheless.

The kicker was at the entrance when I was asked if I was someone’s escort and I nervously replied, Um no, I thought this time was also for the disabled and immunocompromised ? [Shamelessy being like here! Look at my cane! It’s real!] The Costco worker at this point was majorly backtracking and said, “Oh yes of course ma’am, there is a different line on the other side usually, but you good!” To this I am thinking, FOR FUCKS SAKE! Would it kill you guys to have i dunno a sign with some goddamn arrows?, but instead I politely replied that I didn’t know it was my first time coming at this time.

So I’m giving you all this play by play largely just to say that it’s some bullshit. We know disability can be invisible. We know it can impact anyone of any age. We know all this stuff and yet here we are, and it just sucks that you can’t go to the store during a time DESIGNED FOR YOU, without feeling like an anxious mess like you’re cheating some system. Maybe this is just me, and maybe I need to just own it and not give a shit. But it was in the back of my mind the whole time, what if they turned me away? Can they even do that? I don’t like feeling like I need to have a mobility aid or a bad tremor day for someone to believe that I have a disability, but that’s the fight we’re in sometimes. And welp, it’s fucking bullshit man, and that’s what I came here to say.

How do you cope with the haters and anxiety in situations like that? Drop some comments here or on Instagram @the_illest_blog! Thanks for reading my mess

“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