I have recently been formally diagnosed with myalgic encephalomyelitis, ME. It has been suspected by several doctors for years but for various reasons it wasn’t until now that somebody had the courage to be clear about it. After a couple of years in the neverland, where I was considered an abnormality wherever I went in the healthcare system (even at the clinic I went to for my hypermobility/EDS), I’m now starting a process of getting actual adequate healthcare for ME. This means trying out some meds and getting help from an occupational therapist to make my everyday life easier.
I’ve only met with this OT once, but so far she seems good. Besides from a wheelchair and adjustments and equipment in my home, she brought up the question of applying for practical help with different things. It’s still unclear what I will qualify for and be able to afford, but I have to start consider practical help with cooking, cleaning and washing my hair. Basically because my partner can’t be both mine and our child’s assistant and work full time at the job that brings an income.
The thought of practical help is overwhelming. Partly because it’s going to be a lot of work to make it happen, but also because I have to accept that I’m ill. I have to trust a new person. I don’t know if I can trust someone enough to allow them in my home without it feeling like a violation of my integrity. Because my integrity has been systematically violated enough during the last couple of years in the healthcare system.
One of the most taxing things about this is me being a self-diagnosed autistic. Since I don’t have a formal diagnosis as autistic, it will be very hard to claim the right to adjustments to needs coming from my autism. I have a really hard time shifting focus. I really don’t have the mental capacity for too many social contacts, meaning that it will be a huge effort for me to have one more person in my life. I can’t have five different people coming into my home and into a very private sphere. A person that is supposed to help me cannot make polite smalltalk to me, because that steals too much energy from me since I find it stressful. I need help with somebody folding laundry and putting it in my closet, but it’s very important they put it in order. I’m picky about food, partly from my ME (some symptoms gets worse from certain food) and partly because I have a high sensitivity to textures and smells. The only reason I’m not underweight is because I’ve stopped trying to eat things that simply feels disgusting, which puts me an a limited diet.
As an autistic, there are things in how I communicate that needs to be taken into consideration in order to get practical help to work, and not stress me out. But in the healthcare system, I’m not open about being autstic and I don’t know how this will work out.