Anna

I was walking into the store, and some woman driving in the car park slowed down to a crawl, glared at me for a solid 20 seconds, then finally stopped and asked why I was wearing a face mask (the kind to protect against germs and allergies)...

Y’all know I’m all for being open and educational about my disabilities/chronic illnesses and such.

But I truly cannot fathom what goes through these people’s minds to make them think doing something like this to a stranger is ever acceptable????

Like, I don’t know you??? I’m tired???? I’m just trying to get into this store?????

I want every able-bodied person to read what I’m about to say, and read it again, and then read it a third time:

A disabled person offering information about their condition(s) is their CHOICE not their OBLIGATION.

Don’t Ask “Are You STILL Not Well?” Our conditions are ‘chronic’ This means they are possibly never going to heal. After a few years you should catch on to this

Don’t Tell Us About Your Miracle Cure Yes we know about magnesium, crystals, epsom salts, and yoga. We are eating a balanced diet, we might even meditate regularly. The fact that we are still ill doesn’t mean we haven’t tried it. The fact that we haven’t chased after every suggestion doesn’t mean that is the one thing keeping us unhealthy… we get a LOT of these. A LOT

Don’t Get Angry When We Say We’ve Tried Everything You Think Of  We are not dismissing you and your value. We are not being smarmy or trying to throw a pity party for ourselves. We have been researching this condition for years now. Don’t feel so shocked that we’ve already considered every idea you’ve come up with in 5 minutes!

Don’t Tell Us About How Weak Our Generation is and How Back In Your Day You Just Fought Forward and Pretended it Wasn’t There 1) You are NOT chronically ill. Your problems and my ‘problems’ are my ‘normal’ 2) Is being stupid and self destructive really something worth bragging about or emulating?

Don’t Tell us About Your Aunt’s Cousin’s Nephew’s Friend Who Has Our Condition and Still Does The Things We Don’t These conditions have a VERY broad range to them. Some people will have them and live totally normal lives. Some people will struggle with them. Some people will consider even what I do amazing freedom and strength. The fact that the people you know who have this condition are doing things is probably because they are the only ones who are able to be in the places you go. Trust me, I’ve read the statistics. Majority of us are not able to do what we are not able to do.

Don’t Ask Us When We Are Going to Get Past This or be Done Making a Big Deal About This Believe me, it is a full time job as a chronically ill/chronically injured person to not blame ourselves. We don’t need you reminding us what a burden we’re being or telling us we could totally get past this if we just tried. We are trying. And we do get that you’re tired of worrying about our issues. We are too. But unlike you, you can walk away and not notice it anymore. We have to live with this every waking minute. We can’t run away from this because this is us. This is our reality

Ways You SHOULD Talk To Chronically ill/Chronically Injured People

Just Talk to Us Seriously. Just have a light conversation with us. It is stinking lonely going through this and we are always thankful for a distraction. Talk to us about what interests you. Talk to us about if you think whales burp through their blowholes. Talk to us about anything!

If We Can’t Stand Then Sit To Talk to Us This isn’t a demand, but if you want to put us more at ease, it really does help. It is something I myself didn’t realize until I lost my ability to stand for long periods of time. People like to stand while talking. More to the point, they like to stand FAR away from anything you can sit on. Even if you are sitting, people like to stand to talk to you, and trust me. It is both daunting and kind of awkward talking to people’s crotches as they tower over you. If we are sitting down, it doesn’t mean you need to walk away because we are done talking to you. It means we needed to sit down. Sit down with us. It’s relaxing. We’ll talk for hours not distracted so much by our increasing pain and trying to awkwardly stand as long as we are sitting.

Talk About Things Other Than How Hard Our Lives Must Be It’s not like we are completely against it. I notice other people walking with cool looking canes and want to ask them where they got them (cane envy as I like to call it). This is a huge part of our lives and we can’t avoid talking about it entirely because it does take up our schedules, choices, and more. But we are more than our suffering as well. We like to talk about movies, games, books, some even like to talk about sports! I mean there’s a whole Paralympics  thing! (Though not me… Don’t talk to me about sports. I’ll have literally no idea what on earth you’re talking about)

Roll With It If you ask if we want to go to a museum with you, and we reply “Oh I’d love to, unfortunately I can’t stand that long.” or “Unfortunately I get my nerve blocks at that time so I’ll be out of it for the day.” Don’t solemnly go “Oh….” and then sit their awkwardly thinking how you just ruined the mood. The fact that we casually mentioned something like that usually means we are feeling comfortable with you. To us this isn’t a trigger point, it is literally just our weekly schedule. It’s almost the same as saying “Oh I can’t, I play golf Saturday mornings!” Just suggest another date. Or another activity. Ask us if we have anything you might like to try. Just keep the conversation going!

I have fibromyalgia.

It’s the official diagnosis. 

Five years ago, I had 3 major surgeries within a period of 18 months, two inside of 6 months. My body didn’t react well to the stress. By brain decided to go haywire and start misinterpreting pain signals. It also means chronic fatigue and cognitive issues mainly affecting memory and concentration.

On one hand, I’m glad I finally have an answer and somewhat of a roadmap to treatment; only somewhat because fibro doesn’t always respond to meds and it’s a lot about lifestyle changes, and it means a lifetime of pain, because truthfully? I will never be pain-free, ever, and that? That’s a tough pill to swallow, even for someone who’s been living with chronic pain for over 20 years.

So, now I’m researching fibro, treatments, meds, lifestyle changes I need to make, exercise regimens, diet, everything. It also means wading through a lot of crap because a lot of discourse is ‘’Fibro is all in your head’’ or ‘’CBD is the Magic Cure’’ or ‘’You’re just Lazy’’. I do not need that crap in my life and if that’s a thing you feel like you need to say to me? Do Not. Just. Don’t.

If, however, you suffer from this and have concrete, evidence-supported solutions to offer, I’m willing to listen, so please DM me. Keep in mind i might need some convincing about alternative medicine, but I am open to it. Acupuncture works on animals so yeah, open. I’m not a fan of chiropractors and by that I mean I do not trust them. One paralyzed a friend of mine and a student died at the chiropractic FACULTY of my university. SO.

Me: I have anxiety

People: Now you know that you can get better

Me: I have OCD, so my brain spams me with terrifying thoughts until I do things to get rid of them. This is a compulsion.

People: So you know nothing bad will actually happen if you don’t do that! Why not just stop doing it?

Someone: It’s not a big deal, why are you freaking out?

Me: *through sobs* I can’t… I can’t stop, I know it’s dumb… I know I shouldn’t be like this.

Them: Oh, well if you know that it’s dumb to freak out then why are you still freaking out?

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