I need to vent a bit. Often I get this question: “Why do you get invalid pension?”, from doctors! It always makes me speechless for a second. Like, “Haven’t you read my medical documents? Don’t you treat me for many years?”
Yes, I do not look sick, but when I’m in a doctors office, they always get to know my story from me when I’m there for the first time. And still I get this stupid question. I mean, I’m telling them everything about my lymphangioma. Yes, it is a benign tumour disease, but still I get no treatment because it’s not well known and all one can do is surgery, what not applies to me since my cysts are too small, in a difficult to reach place in my abdomen and too close to vital organs.
I’ve had more than 10 surgeries when I was younger and the tumour were bigger. Because it was growing unseen for so long time, it let me there with a scoliosis. So I’m used to severe back pain since I’ve been little. In addition to that, my left leg is partially paralysed because some doctor made a mistake in one surgery. Not that I have restricted feeling, also my movement is restricted and I suffer from chronic pain. It seems as if many people don’t understand what chronic means. It means that I am in pain 24h, some days it’s better, some days worse. Especially when it’s rainy and windy outside the pain gets unbearable. And if I say unbearable I mean it. There have been many painful nights, where it was so horrible that I wish to die.
Nevertheless people still seem to not get it. Some years ago, before my pension, I took part in a work testing to find out if I’m able to work or not. Of course due to the previous mentioned disabilities I missed a lot. Many times I had to go early because the pain got too worse. And in winter, when it was icy on the streets, I couldn’t leave my house for 4-6 weeks. I have to mention this work testing happened in a facility for physically disabled people. One day I got a talk with the boss and she asked me why I had so many missing days. She told me: “We have more severe disabled people than you here, and they also can come work!” I was sitting there with open mouth and angry. Was this a fucking competition about who is the most disabled person?! I gave her a furious look and asked back: “Do they also have to cope with unbearable pain every damn day?” She then said nothing no more.
When I first applied for pension and I had to go to some doctors for a medical examination, the first doctor told me that I’m able to work 3 hours per day. I found that ridiculous. In addition to my pysical disabilities there came the mentally ones. I’ve hadn’t had my autism diagnosis yet, so I was diagnosed with social phobia. The doctor said, I “just have to go into a inpatient hospital, take some medication and do therapy” to be able to work again. Of course I didn’t listen to his “advice”. This would have make me more ill.
Also I find it kinda stupid when doctors told me that I can at least do an office job. Jo, sitting a whole day in front of a computer is super good for my scoliosis (sarcasm). Sometimes I wonder what they were thinking… Shall I tell you how it really looks when I’m “working”? I can do maximum 20 min writing in front of my computer and then I need a break from 2hours. Often, when I had some appointments or was grocery shopping, I even need a nap. I need a lot of rest during the day. To write this article is already exhausting for me that I consider to take a nap when I finished.
This was only about my physically disabilities. If I consider my autism, I find it even more weird that people think I can work. I can’t stand people. Literally. One hour grocery shopping and I’m done with the day. People, speaking voice, music, the lights, the scents from different groceries, that all exhausted me.
In work I would need to communicate with people, which I have big difficulties to do so. Small talk is uninteresting and if someone wants me to do something important I might don’t get what exactly they want me to do. I often misunderstand people, or they misunderstand me. I can’t hear if someone is friendly, sad, mean or bored. I don’t understand “jokes” and things like sarcasm and irony. Online it’s quite good possible to talk with my friends, but if I had them in front of me, I’d feel lost. I literally don’t know how conversations work. If I imagine I’d had to do it every day at work, I’d be lost. I would have to ask every 2 minutes what they want me to do because I might not get their instructions. I’m not stupid, no, it’s my autism.
Sorry for the rant, but sometimes I just feel like they want to kidding me. I feel hopeless.
“Why do you get invalid pension?”
Maybe, because I have a rare tumour disease what is not treatable and get worse when I’m stressed?
Maybe, because I can’t use my leg properly?
Maybe, because I need high dosed painkiller every day, what sometimes keep my brain so sedated that it feels like it’s wrapped up in cotton candy?
Maybe, because I have severe difficulties to understand other people (despite that I can’t stand to be in one room with more than 3 people) due to that I’m autistic?
I’m tired of explaning…
A socially exhausted