Before I got a diagnosis, I went through the medical system, where most doctors said, “most likely psychogenic” instead of telling me, that they just had no idea.
With this suspected faulty mind, causing me to be so ill, I felt insulted, in the sense of victim blaming.
Some doctors managed to even diagnose me with unwillingness to seek treatment, as I refused any more psychosomatic inpatient stuff after having sought treatment before. Needless to say, that with ME, it made me more ill, even though I was lucky and the clinic respected, that I wasn’t fit for the whole therapeutic programm, due to my weakness.
Doctors sure of my mental flaws, often asked me about morbid gain.
Uneducated people did too. But besides having “gained” a few online friends, there really isn’t anything else.
But there is a huge loss.
I lost my health, my ablebodiedness, I lost being able to follow my calling, lost my carrier. I lost the possibility of having children and watch them grow up.
I lost the ability to follow many of my passions, my bliss.
I lost my social life, as most relationships grow cold fast, when you are unable to sustain it by meeting up, engaging in stuff, even being able to call or text frequently.
There is another thing about my body. I really, really miss being ok. The many types of pain, parasthesia and discomfort I feel every waking moment, are something I have to take into account, like some kind of a a chore. Dealing with pain uses up a huge chunk of my energy.
I lost the carelessness of the healthy person I was. I did most things with too little appreciation, I guess, because of knowing that I could do it again and again, if I wanted to.
Now I can’t do most of the things I want. Not even once.
If the state of my health allows an outing, maybe going to the park, a few hundred meters from here, I feel like a hoover, taking everything in, scared to miss something precious, a sound, a smell; colours that I won’t get to experience any time soon.
Stacking up my losses, I still have a heavy one to report. I lost a huge part of my mental capability. My memory is severely affected. Both, making and retrieving memories, doesn’t work too well, if at all.
My concentration and attentiveness are pretty close to somebody with ADHD.
I only understand the content of a conversation, if I actively listen. It’s an effort I have to make. If my husband says something out of the blue, I don’t even recognise the words. That is pretty scary. And I guess, being asked to repete stuff must be annoying for him too.
I even seem like someone with dyscalculia, just that mine waxes and wanes. It comes on, when my memory is too bad to keep a number in mind, so every mathematical operation is damned from the start.
I was pretty good in math back then.
I sometimes feel on the brink of losing myself.
So the next one wanting to talk to me about mortal gain should just get lost!