Tag: stigma

Prove It

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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

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The Get Well Card

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So I wrote this post a while ago and then fell unfortunately quite ill again never making it “back” to work, so it’s a little out of context but wanted to share it anyway.

Woof. This is a doozie but just happened and has me feeling all kinds of ways, and I should write about said feelings yes? That is generally the purpose of blogs right? Right. So let us dive in: the past almost 3 months or so the struggle has been real, pretty incapacitating shit, flaring on all cylinders you know the drill. This fuckery on behalf of my immune system, resulted in me needing to take some considerable time off work, which I hate for a host of reasons but that’s not the title of today’s post so I’m not getting into it. I am new to my school this year, after leaving my previous teaching job due to how my illness was handled, so mucho anxiety surrounding the whole thing.

Today was my first day “back” though I had a few false starts and relapsed which sucked because of the welcome backs, anyway I digress, and I was of course greeted with lots of love from my kiddos who don’t get the whole chronic illness thing they’re just like, “hooray you’re better!” And I’m like, “hooray sure not really but it’s fine yay!” As well as the usual “Good to see you,” or “Welcome back” from my coworkers. However the surprise came in the form of a simple envelope with my name on it containing a “Get Well” card signed by the whole staff.

So at first I was ready to just burst into tears because I think that card with all those names felt like some kind of validation that as someone with a virtually invisible illness you never get. It felt like them saying we see your struggle and we support you, and that was fucking monumental. I still haven’t even read all the nice shit people said because I’ll cry and then flare up and it’ll be a whole mess. My own husband can’t even say nice things about me without me blubbering let alone my professional peers? Fuck.

But for some reason in the back of my mind along with this amazing feeling of support and validation I had a familiar twinge of bitterness. As I’m sitting here looking at this sunshine-y bumble bee and the bright flowers on my card, I read the sunny yellow letters, Get Well Wishes…there it is. That familiar twinge of bitterness did have a reason. It’s those those two words that always seem to find us Get Well. This is one of those things much like the phenomenon I mentioned when discussing my tremor, it’s always well intentioned but it’s also kind of really grinds my gears ya know? I have no idea who bought the card and the extent to which they knew my health situation so this instance didn’t bother me but, even some of my extended family members still say shit like Get Well Soon, and I want to be like bitch do you know what chronic  means?

For so many of us there is no permanent well, or all better or cure and it’s one of those things where at least I’ve found you really have to teach people how you want to be treated. Like hey maybe don’t say “Get Well soon” to a patient with a disease they’ll have for the rest of their life. Not cool bro, not cool. Maybe say “I hope you can feel a little better” or “get some rest.”

The card my coworkers got for me really shows where things are for a lot of people with chronic and invisible illness. It was validating and acknowledged my experience and showed support. However things still aren’t quite there yet in terms of knowing what it means to have these illnesses. When I say autoimmune disease in the break room people are like, “wait…what?” and every time I have those welcome back hugs from my kiddos and chats with coworkers and then relapse and have to extend my leave, I know people don’t totally get it. But nonetheless my sunshiney bumble bee card is proudly on the fridge because semantics aside I am truly grateful for the intention and show of support from my school. Thinking of my team and the faces of my kiddos keeps me going, here’s to hoping I “Get well soon.”