gay math nerd

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Lots of funny mugs, shirts, and hoodies there, covering all kinds of illnesses (mental, chronic, autoimmune, neurological disorders).

people that adapt to your chronic illness,

people that give you a ride and pick you up places without making you feel guilty

people that go to the ER with you

people that make sure to walk slowly so you can keep up while using a mobility aid

people that are willing to try different things to help you

people that are willing to learn and listen to you when speaking about your chronic illness

So, the other night I had to cancel my DoorDash shift because I had a migraine.

And I was telling some friends about it, saying that I felt guilty for not going out. It's not like I was totally incapacitated after all, I was just laying on my couch with all the lights off, unable to open my eyes for more than the few seconds it took to read and send messages.

One person said that if that didn't count as incapacitated, nothing did. Someone else pointed out that "I'm lying in bed and can't move because of pain" is generally considered a 9 on pain scales.

And I just.

I've lived with chronic joint pain since before I can remember. (Literally. My mom says that I used to sit and cry and hold my feet when I was a baby.) By the time I was 8 or so, I'd figured out that if I laid down and cried every time I had a flare-up, I'd not be doing much else. (Also people would just get mad at me because I didn't look like there was anything wrong.) Then I started my period and went through all of that again. I just assumed that there would be a few days every month where I'd go to school and spend most of the day with my head on my desk, taking as much tylenol and ibuprofen as I could, a hoodie tied around my waist so tightly I could hardly breath, because that was the only other thing that helped.

And that's been my whole life. I forced myself to go to work at my retail jobs when I limped half the day because my legs hurt. I sat and wrote papers for school when my arms felt like they were being stabbed with hot wire. I piloted myself around my janitorial job scrubbing toilets with hands that could barely grip my tools and ached constantly. Nowadays, I go out and drive around the city for hours even though it feels like my hips and knees are cracking and my elbows are shrieking.

But when doctors ask me what my pain levels are, I say, "Oh, a three or four," because I've gotten to the point where I can get through the pain and keep doing things. Because I don't have a choice. (And all the pain scales I've seen rank your pain level based on how much it prevents you from doing.)

Thing is, that headache I had didn't hurt any worse than the other pain I've dealt with my whole life. The only reason I let it keep me home was because I couldn't see, and being able to see is kind of necessary when your whole job is driving.

Someone telling me that the state I was in ranked that high on the pain scale was staggering. I still don't know what to do with the information, but it's deeply changed how I see the things I've come to accept as normal.

I use this one now. I’m almost always between a 5 and an 8 on the right chart, which is apparently a normal person’s 8-11! Having a greater capacity to handle pain because of always being in pain is a mindfuck sometimes.

I would like to see more people talk about how jobs treat disabled employees.

I used to prep, wash dishes, and cook at mellow mushroom. I had chronic pain that wasn't NEARLY as bad as it is today, but it was still very debilitating. I told my employer "i cannot stand more than 4 to 6 hours. I CANNOT do shifts longer than this due to my illness." And even though i made my boundaries VERY clear, everyday i worked it was 8 hours at the least and 10 or 12 at the most. I would go up to my manager and say "look i really need to leave, my shift is over, my chronic pain is killing me." And he'd say "we really need to here, you HAVE to push through." And so i did, and after one, ONE month of that job my crps got incredibly worse to the point where i could no longer walk my dog around the block which was .5 miles. I quit, and that was FOUR years ago, and ever since that day I HAVE BEEN BEDRIDDEN AND HAVE TO USE A WHEELCHAIR. It is my biggest regret in life.

My best friend who has seen my whole journey has recently developed undiagnosed chronic pain, and she is in the EXACT same scenario i was 4 years ago. Busting her ass at a pizza place with extreme pain that hurts her so much she tells me "im in so much pain i don't even feel like a person." She doesn't feel LUCID. And her manager and coworkers are saying the same thing "if you don't help us you will let us down, we'll be in the shit."

That job thats hurting you isn't fucking worth it. I promise you no money is worth losing all your physical abilities and never getting them back. Your coworkers and boss do not give a shit about you, so don't you dare suffer for them. They will never understand your struggle and they will never try. They truly think being understaffed is worse than whatever pain you experience. They would rather you permanently damage yourself than inconvenience them. FUCK THEM. DON'T FUCKING DO IT!

I drove myself into the ground working for an understaffed pharmacy and the thanks I got was getting fired for calling in on my fifth day each week because I’d already worked 40 hours and couldn’t move anymore. I’m still not the same, and it was also 4 years ago (though I suspect multiple rounds of Covid starting in January 2020 just before I had to start calling in every Friday also had a role to play)

The second hardest thing about being diagnosed and living with chronic illness is coming to terms with the fact that you will never "get better". It's saying a mournful farewell to the things that could have been. It's uttering a resentful and tearful goodbye to the "old you", solemnly grieving as you reluctantly welcome this new, weaker, often pathetic feeling self.

The hardest thing about being diagnosed and living with chronic illness is watching the people around you act as if they are entirely incapable of coming to terms with the fact that you will never "get better". It's those times when they can't hide their disappointment that you still can't get out of bed. It's the constant suggestions of old wives' tales and supposed cures. It's the absolute denial that you are different now, and the outright refusal to accept that that's okay. That it has to be.

I do genuinely think if someone tells me that I just need to be more active to help my chronic pain one more time I will lose my shit

Bro I work out at least 3 times a week in addition to my regular daily activity. Lemme tell you, I’m always in more pain the days after I workout.

The issue is not my activity level. The issue is the chronic disorder. Please get it through your head.

Every time I try to add just 15 minutes of yoga a couple times a week to my routine, I end up so wiped for days that I fall behind on the few chores I can manage to keep up with and spend the rest of the week trying to catch up and never getting a second session in. Every single time, it becomes a war against my pain to just keep my routine as it was for the rest of the week.

I don’t know what else I can try to do that would be even easier on my body than yoga. And it’s not like I can’t tell I’m getting weaker and having more and more issues with my joints and shit. I know that exercise would help rebuild muscle strength which in turn would fix some of the problems with my joints (my knees specifically I believe are under too much tension from my lower leg muscles because my thighs have gotten weaker), but I literally don’t have the energy or the stamina or whatever else necessary to work out regularly. All it does for the moment is sap all my energy, increase my pain, and leave me scrambling to do the things I have to do each week.

It’s one of the reasons I’m so suspicious that I have long Covid, which causes the same mitochondrial damage as seen in ME/CFS and is potentially the root cause of the chronic fatigue associated with these illnesses. It definitely feels like it’s my entire body not getting the energy it needs to do anything.

The thing about being disabled at the "prime" of your life is that you just forget sometimes that other people...aren't?

I eat well and take care of myself. I workout daily for at least 20 minutes. My hygiene is good. I keep up with my chores and responsibilities, and my studies as well as anyone in my eyes could. I get to socialize and have a seemingly stable life and work/life balance.

But I have to use the elevator more often than not because climbing 4 floors gets too much on my knees. I get migraines regularly that leave me unable to look through the window. My brain fog gets bad even when the pain isn't and I can't work or else I'll cry from the frustration bc it won't be productive. My hands hurt if I grip anything too long or too hard. I get dizzy spells and vertigo too often and it's not fun. I could go on really but the point is-

You can't speak about it with any of your peers. They don't get it. They don't see it. It's an invisible disability and they can't see it even if you run your mouth and explain a hundred times. They. Just. Won't. See. It. You hold up well and you sound well and you put on a smile and no matter how much you try to explain that you're struggling nobody believes you because you look fine.

And isn't that depressing?

the incredible harsh quiet revelation that you have when you are diagnosed with chronic illness(es) is that you will never be healthy again. I don't think able bodied people are able to understand what it means to just resign to the fact that your life is not just yours anymore. you share it with a weight that will be with you until you are gone from this world.

Please please please I am BEGGING y'all

When you visit someone who is chronically ill or disabled and their house is not as clean or tidy as you'd like: just don't say anything

We *know* okay.

Trust me, we know

We'd love to see it differently too. But the truth is we *can't*. And you know this, you do!

So please. Just shut up. Don't pile on more guilt and feelings of inadequacy. We have enough of our own

Why leave this in the tags?