I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life.
While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about. So that we’ll be treated according to what this disease deserves.
It’s not a job. It’s not a calling. It’s not fun. It’s not something I’m proud of. It’s not part of satisfying some silver lining porn. It’s born out of losses, pain and suffocating necessity because at some point I would like to get better. I would actually like to live before I die. At 20 years of illness that clock is ticking louder than ever.
I of course appreciate that people like things that I do, but realize I fucking hate having to do this. It’s not an enjoyable achievement for me. It’s demoralizing and exhausting.
I have better things to do in my life. I have a job and I would like to get back to it or start a new career. Not this shit.
I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward.
Thank you!
