hi there!
i’ve been increasingly more sick and bedridden over the last 4 years, and recently, i’ve been given a few diagnoses.
i have fibromyalgia, rheumatoid arthritis, and lupus. i also have some thyroid conditions going on (possible hashimoto’s disease) and cushing’s disease. the latter two were just diagnosed the other week. i’m less concerned about those two because with medications and one simple surgery, they can be easily managed.
i’ve known i had fibromyalgia since around 2020, as my mother was diagnosed with it when she was younger and, at first, my symptoms were mostly just pointing towards the fatigue and slight pain element.
over the years though, the pain got worse, i got much weaker, and started to become bedridden for weeks or months on end depending on my flare ups.
end of 2023 they gave me the RA and lupus diagnoses and i’ve been started on different nerve blockers and bi-weekly shots for the pain.
my close family and friends have watched me struggle and at some capacity know how i feel. and on another level, they’ll honestly never be able to understand because they aren’t in pain 100% of the time, or so tired it’s hard to use the bathroom, or so weak it hurts to walk to use said bathroom, etc.
they don’t understand how fucking angry and mad i am, not even necessarily at myself, but at the circumstances where i can’t take care of my most basic needs sometimes, or that i can’t help around the house and see how much it stresses my husband out to literally “do it all.”
they don’t understand that when i snap, most of the time, i’m not mad at them at all. i’m mad at the pain, or at whatever i can’t do that i used to be able to, or just in so much pain it’s the only way words come out.
i don’t really know how to explain or convey any of this either. does anyone have any good book suggestions that are specifically for family and friends of people with chronic illness and pain that helps them understand what i can’t seem to fully find words for?
anything helps! even short articles.
thank you in advance for any helpful suggestions!
by sweetiebabylove
5 Comments
In same position as you and I’m sorry you’re going through that. I wish I had a book rec but I don’t. The only thing I recommended to my family was to watch Unrest. And there was an article about complicated grief for those with chronic illness but it was very long and only my therapist read it. If I can find it I’ll send it to you.
This isn’t a book, it’s a zine, but it’s filled with resources and tips, including tips for friends and family. It’s name your price, too.
[Chronically Badass: A Guide for the Young and Chronically Ill by Diane Murray](https://dmurring.itch.io/chronicallybadass)
“What doesn’t kill you: a life with chronic illness- lessons from a body in revolt” by Tessa Miller
Chloé Cooper Jones’ memoir, Easy Beauty.
Broken by Jenny Lawson. I felt both deeply seen and had a damn good cackle reading this book.