Hi finuch
Welcome. I understand your feeling alone while facing multiple autoimmune conditions. I don't share your exact diagnosis but I have primary Addison's Disease (adrenal failure) which also makes me prone to other autoimmune conditions. I'm waiting for a neurology appt. to continue diagnosis for possibly Sjogren's, Periperal Neuropathy or B12 deficiency. (or possibly all 3). I am also on my own and have had many family & friends who don't understand. I was unwell for a number of years with a history of misdiagnosis and mistreatment before they finally got it right. I have not been able to work at all for 5 years and was only part-time for 8 years before that. When I finally got the AD diagnosis it was like they all thought I was cured and should go back to work
I recently had friends, who I've known for more than 30 years, say to me "Just force yourself to do it" when I mentioned how frustrating it was that I wasn't able to do my own house repairs anymore. Consequently I no longer talk to them about what I'm dealing with. In some ways I can sympathize with their lack of understanding - when you are healthy it's hard to comprehend what someone may be going through day to day until you've had to live it yourself. Many years ago (in a former life) when I was well, I had partner who had chronic pain and kidney malfunction due to an accident. I thought I was being considerate of his health needs and energy levels but it wasn't until I became ill myself that I really understood how tough it had been for him. So I've learned not to let their attitude annoy me or to expect anything from them. I've also learned to take the good days and run with them (ie get things done) and to just get through the bad days.
I hope you find some answers on Neurotalk - keep reading and posting - I'll keep an eye out for how you're getting on. All the best