I started having chronic pain at the age of ten, thanks to a whiplash injury triggering the onset of Fibromyalgia. Chronic pain became a fact of life for me; needless to say, I kind of grew up pretty quickly because of it. I have no recollection of what it’s like to be a ‘normal kid’ or a ‘normal teen.’
At the age of 7, I was pulled out of public school for home schooling - my immune system was crap; I attended one more day in the first semester of first grade than I was out sick, if that gives you an idea. So, I had very little socialization with kids my own age, and at 16 I went to an adult education facility to work towards my diploma as opposed to a GED. Around here, that basically means I was suddenly thrown into a crowd of dropouts and people that were expelled - generally not a good crowd. That went about like you’d expect, and I wound up, after legal trouble, getting my GED.
Now, I told you that story to tell you this one.
I’ve worked two jobs in my whole life. Just two. The longest one lasted about two months, and even that had multiple call-offs which lead to my being fired, the shortest one lasted a week because, hello crap immune system, I got sick, and had to call off multiple days in a row thanks to not being able to talk (it was a call center job.) Boom, fired.
I’m now 28. No job experience, extremely limited in what I can do for work - by doctor’s verification and where applicable, orders, I can’t sit for very long, or stand for very long(15-30 minutes). I can’t lift anything over about 15 pounds, I can’t squat habitually, I can’t kneel, I can’t climb ladders or stairs. All of these things are detrimental to my health. I also can’t look down or look up for extended periods due to what’s called a Chiari Malformation - a part of my skull didn't form right and a small part of my brain, the cerebellar tonsils, have herniated down into my neck. Bending my head down or leaning it up applies pressure and tension in this area and triggers extreme migraines as well as other neurological symptoms.
I have Reynaud’s Syndrome which causes my hands and feet to randomly go ice cold, blue purple and black, or sometimes bloodless white, and be completely numb. As if the Chiari didn't cause me issues with my grip let’s throw that in there too. If I worked a desk job, they’d need extra insurance against people having their eyes put out with the pencils and pens I would accidentally throw when trying to pick them up - although I don’t think there are many insurance policies that cover ‘pencil in the eye.’
I have arthritis in my knees, degenerative disc disease in my thoracic spine, scoliosis, the list goes on.
Take all of this into consideration, and please, if you have ANY ideas… tell me what the hell I’m supposed to do for work. Because according to FSSA and the government? I’m not disabled. There are jobs out there I can do! WHO THE HELL IS GOING TO HIRE SOMEONE WHO IS GOING TO CALL OFF ANYWHERE FROM ONE TO TWELVE TIMES A MONTH?! AT RANDOM?! AFTER BEING FINE THE DAY BEFORE?!
Do you see my issue here? Do you see why I’m so continually pissed at the government for making me fight so hard for disability? The state government for taking my food stamps because I’m not working 30 hours a week?
This has been my life since forever, only it’s been getting progressively worse. I have very little self worth because hey what the hell am I contributing to anything? I can’t even earn my keep, I can’t even contribute the $200 a month from food stamps to cover my food in lieu of rent to my parents!
How in God’s name am I supposed to feel anything but utterly terrible about myself about things that aren't even my fault when my government is telling me I can do things that I can’t do? That I've never been able to do! I can’t even provide the necessities of life to myself! Everything I have my parents have bought for me - my food, my clothes, my phone, my furniture (except my bedroom set that I inherited from my grandmother). There are things that I literally need to try to improve my quality of life that I can’t get because I don’t have the money and neither do they!
I just don’t understand how the government can look at the 2″ and change stack of medical records and tell me I can work, tell me I’m just being lazy, tell me I’m not worth the barely-able-to-be-lived-on monthly stipend they would give me.
I also don’t understand how they don’t understand what that does to me. It makes me question my own sanity, whether I really am just crazy, that maybe all of this pain that I’ve lived with for 18 years is all in my head and I’m just screwed up enough to believe it’s real and if I just snapped out of it everything would be okay. But God I know that’s not true. I do. It just. I can’t. I don’t know what to do anymore. I’m in tears as I’m writing this because it just hurts so much. I don’t know what life is. I don’t.Because I've never had the opportunity to really live it.
And I don’t know how to deal with that, either.
(P.S. I apologize for the somewhat disjointed A-to-Q-to-C nature of this post, my brain is just as much all over the place as this post.)
