I’ve been listening to an audio book about psychosomatic illnesses and it features many people who experience chronic illness and what they are experiencing: living every day in pain, how it get’s “normal” to people around you and they forget about your suffering, how Dr’s aren’t really helpful or often don’t take your pain seriously, how society just expects you to continue living like normal despite constantly being in pain, etc.
All throughout I’ve been thinking of you and I can’t even imagine how miserable of an experience that must be. I wish that there was more that healthcare could do for you. It’s so unfair.
I wish I could give you a hug. ♥️♥️♥️
Thanks for this (although I will decline the hug because my thoracic spine is trying to fuse).
I know I generally say 'it's a rough time' but it genuinely almost always is. The lower back injury is still healing wrong and I'm seeing someone on Friday about that, and then I need to get results for other autoimmune tests picked up and I straight up don't have the energy.
I took a week off to try to catch up on sleep.
I'm not as badly off as others as I do have some diagnosis - but it affects primarily afab people so there's no research or treatment. But at least 15% of doctors believe me when I say that's the problem, so there's that.
I currently don't have access to painkillers (well, I do, but I would need to retire and surrender my license since testing doesn't differentiate between 'impaired' and 'took medication as directed six days ago') and the burning in my spine is unpleasant at best and obstructive at worst.
90% of the time it's like "I'm fine, this is a normal amount of pain to be in, it's my fault for breathing harder than I needed to" and 10% of the time it's just staring at the ceiling because I can't move.
So I guess. Yes. Can confirm. It's miserable. My ex is lovely and offers to do things for me and never minds if I cancel plans, and another exes ex is also disabled, I do have other disabled friends (which I never see because our bodies don't work) so there's a shorthand there where we vent about doctors and such. But normal people don't seem to understand the sheer amount of effort that goes into existing, or how much it hurts just on a regular basis.