I advise you not seek this content out. There's a reason I'm not linking it. It's full of abelism and gaslighting. But I just want to show you what I'm about to rant about because this woman is claiming chronic illness doesn't exist and women specifically are faking to get a diagnosis for attention. And she's claiming this is a mental health issue.
As a disabled person, I need to rant.
The first time I got a migraine. I was 10 years old. They were near constant. I know exactly how old I was because when I went to the doctor, he said it was probably the braces shifting the bones in my skull. They were called just headaches.
If you've ever had a migraine, you would understand that if you were experiencing this much pain, and you were told there was a way to make it stop, you GRAB that shit. I had my braces removed before my jaw was finished straightening because I shouldn't have had braces in the first place and my baby teen started falling out (very late, I know).
And when my adult teeth came in, I BEGGED my doctor to not give me braces again. And remember what I said earlier. If you're experiencing migraine level symptoms and you were told there was a way to make it stop. You grab that chance. Yes, my teeth are still fucked up. Yes, this leads to me dealing with chronic jaw pain.
You don't get how much pain I was in just... all the fucking time. My parents had to carry large bottles of advil with them at all times. Some of my earliest memories is being at a restaurant and my mom being like "I know this is weird but do you have any advil? I forgot to refill the bottle and my daughter is in too much pain to eat". Just from the migraine.
I was taking adult doses of pain meds with my doctors telling me to alternate Advil and Tylenol every 2 hours at the age of 10 (most meds say not for children under 12). Because migraine was not a diagnosis that existed.
When I was in high school, I finally did get a diagnosis from my PCP of "migraine". Idk if it ever went on the record but a was prescribed migraine medication. Which was essentially prescription strength advil and imitrex. There weren't exactly a lot of options back then.
And I again have specific memories of being in school. The ring of the fire alarm during a fire drill triggers a migraine. First thing I had to do when we went back in was go to the nurse and nurse had to call my parents and they had to bring my meds (special school rules the nurse needed the prescription bottle which would make it hard to have any at home). And the nurse was like "when's it gonna work?" And my mom was like "idk. If it does work it'll be like 30 minutes" and the nurse was like "Yeah we can't keep her here 30 minutes on a maybe. This is no place for a kid with a migraine. Take her home."
Throughout all this? I didn't consider myself disabled. Because I could still function. I wasn't missing too much school to pass. I was still able to pass my classes.
In college though it got really bad. I was missing 3 or 4 days of classes at a time because I couldn't hold down anything but water. There's weeks I did go to class that I just blacked it the pain was so bad. I got hurt from the vertigo regularly. It got so bad u finally sought it a migraine community just to try to understand what the hell was wrong with me and just so I had a place where I could vent. It sucked so damn bad.
And this community helped me immensely. They had a list of headache specialists which helped me find my doctor. They gave me a ton of treatment options to discuss with my doctor and they suggested vitamin supplements that I could also discuss with my doctor. It took a few years because I don't react to most common migraine meds, but a year out of college, I finally got a treatment plan that fucking helped. I live a pretty normal life now the only exception being the couple of hours it takes my meds to kick in.
And even through all of that, I hesitated to call myself disabled. I was still functional enough to graduate college without the ADA (but honestly I'd have done better if I had accommodations for all the time I had to miss). My migraines weren't frequent enough to be considered "chronic".
The only reason why I'm able to comfortably call myself disabled now is because of the invisible illness and spoonie communities. They were like "Your health issues impacting most of your life even though there's no physical symptoms? You keep missing important events duev to your health issues? You limiting what you do so to not impact your health issues? You're disabled."
Because I was so afraid of taking something away from physically disabled people by using the label. I'm still going to heavy metal concerts (yes they land me in bed for days after with a migraine). I can hold down a job and still semi-function (I'm privileged that I can get a remote job so if I can't get out of bed I don't need to call in. And I work for small companies that are more forgiving of health issues.)
Listen. I 100% believe in the spoonie movement with all my heart. But what people don't realize is that invalidating the spoonie movement invalidates people like me. People that have had pain since childhood that almost no medication can touch that's coupled with other neurological issues that is detrimental to our health. I was exercising every day, but I had to stop because there were too many days I couldn't hold down food. I was eating very healthy, but I had to stop because there were too many days where calories were more important than vitamins because again I was lucky if I could hold down food. The pain was so bad that there was gaps in my memory and I hurt myself but I couldn't remember how between the vertigo and the memory issues.
And yeah. My migraines don't affect me like that now. I'm on treatment where I don't "look disabled". I can function with the best of the abled people. But it took years of meds and trial and error with my doctor to get here. I'm functioning with the exact balance of person meds and activity levels to keep me found for the things I enjoy doing.
And I need people to realize that's what invisible disability is. Paralyzed person can't walk? They get a wheelchair. I can't go outside without spending the rest of my day bedbound from the bright light and heat? I get meds that help sooth the nervous system (honestly I don't know how the fuck my meds work but this is the equivalent of my "wheelchair")
Yeah! We look functional. That's the point. That's the entire point. Because before this we lost friends and failed classes because we couldn't get our of bed our body's failed us so hard. The only reason why abled people think we don't exist is because we literally couldn't leave the house. And online communities have allowed us to be seen on those worse days when we're normally hidden behind closed doors.
I was able to interact with people online yesterday with my migraine, when previously you wouldn't have been able to see that because I literally couldn't leave the house.
