I was twelve when I first started getting symptoms. I was fourteen by the time they completely derailed my life. There’s something very insidious about spending your teenage years paraded through the halls of various hospitals and clinics like you’re some sort of freakish anomaly. I can’t say it did good things to my head – it really didn’t.
When I was growing up I knew doctors and hospitals where somewhere you went to feel better when you were sick. I had faith in them much like I had faith in Santa Claus and the Easter Bunny. I believed cops were here to help and doctors existed to heal. Life was simpler then… I felt safer then.
At first it was just a matter of seeing the right doctor. Sure, this one didn’t know what was wrong with me but the fancy new specialist in town would! But after so many visits these little road trips become routine and you go from hopeful, to fearful, to angry, to numb. Hopeful was at the beginning when I still had faith not just in a diagnosis but a cure. Fearful came after that when I realized no one had any idea what was going on but they were going to stab and test me anyway! Angry came some years after. White male doctors in particular have a severely bad habit of looking at a young female patient, and upon not being able to immediately diagnose them, recommend them to a shrink. Clearly their physical illness must be in their frail female brains, right? Sad thing is they don’t even realize they’re doing it but all I can ever think is, “Fuck you.” Something I was trained not to say. It’s not polite. They’re only trying to help and blah blah blah. Numb came after so many of those and realizing it doesn’t matter what you say or to whom you’re screwed no matter what so just put on your Johnny, shut up, and go.
I hate hospitals. I hate the cleaner they use. That smell! That smell that sticks in your nose. I hate the fact they often paint the walls green because some scientific study suggested green is calming and healing. I hate the shitty paintings on the wall. I hate the diplomas and degrees the law requires each doctor to display. I hate checking in. I hate getting measured and weighed like a head of cattle. I hate saying yet again, “Well I was in here before buuuut….” And as the years went on I started to hate the fact I was often more educated on my own illness than the doctors were. These were the same doctors who’d denounce Google, shush you condescendingly, and tell you they knew what they were doing. So why did I feel like I was seeing a mechanic for my cough?
I’m an adult now but the messages sent to me then – that my pain isn’t as bad as I making it out to be, that I am exaggerating, that I am somehow just trying to seek attention or am mentally unsound, have reverberated. Now when I go to the hospital it’s because I am going to die if I don’t. That’s how I ended up choking on a piece of steak for twenty four hours before it was removed. Sure, twelve of those hours were bouncing from one ER to the next but the twelve preceding were all me. I’ve gotten so bad that I didn’t even go to get stitches when a large dog had the whole calf of my leg in his mouth or when a different dog had my head in his mouth. I have the scars to prove this. I wear them like a badge of pride. Some people have tattoos to tell their life story – I have scars. Even if I broke a bone now I would have to think really hard about what I want to do with it. Is it a leg? Then I suppose I will go to the hospital. Is it a finger or toe? Fuck that, I will set it at home.
I have watched friends wince in horror as I do something to doctor myself up. They say they can feel my pain. I find this hilarious because I am so used to pain I don’t feel what they’re watching… These are the people who know I am hardcore and not making shit up and they’re great, the reason I continue to exist. They respect me. The medical establishment? It’s degrading. Still is. So I avoid it like the plague.
This is the effect of spending your teenage years chasing the wild goose that is invisible illness. If that isn’t enough then I still have to deal with people on the outside of the medical fields who also see me as vibrant, healthy, and completely fine! There were so many years I spent feeling like shit because maybe they were right, maybe I was exaggerating, maybe I was just depressed, maybe I was just being lazy, maybe I did just want “an easy life” with someone else taking care of me permanently. How fucked up would that be?! Only in the past few years have I realized these people have no place in my life. Some are just stupid, and those people you can usually educate, but the truly toxic ones that try to tear you apart mentally – those are people so miserable with their own lives they’re just jealous of your life. It’s best to cauterize them out of your social circle and move on, even if they’re family! Trust me, you’ll be better off. Don’t ever let anyone deny your reality. The only person that knows what it’s like to be you is you and don’t you ever forget that! This is what will keep you strong.