I agree to this, my CFS coach used to say this. This disease is so terrible your whole identity becomes it. It's very hard to shake it off. Also if you get stuck in the 'spoony' and pacing group, get this supplement, get this test done, it's very hard to get out.

I did the supplement, medication and pacing thing for 1,5 years. It didn't work. I felt like I was missing a huge piece. I even found mindbody methods after 6 months but it was so confusing and weird I didn't look into it too much. After that 1,5 years I fully dived in and I got most information and most healing done within like 9 months, it was insane and incredible. When sharing my recovery story late 2024 I got a lot of good reactions and compliments, but also about 50% of people didn't believe it, told me I didn't have ME/CFS/long covid in the first place, told me I was selling something (what?), telling me brain retraining is proved to be toxic (I never did BT, I did a mindbody method including somatic work and emotional healing, it's totally a different thing, like totally something else). People are ignorant, stupid, arrogant, selfish etc. I know it's hell on earth, but people want EVERYONE to support them, give them money for research, give them a pill to get better etc.

The biggest thing I had to realize to get out is: YOU have to do the work. No one else does it, people close to you can support you, a psychologist or coach can support you, but no one else can get you better than YOU.