Sometimes I love articles about invisible illness. They make me feel like I'm not alone. Like someone else understands. Someone else has the same experiences I do. It makes me feel hopeful.
Other times, I'm in terrible pain due to my chronic illness and I wish I had never read those articles, because I realize the awful truth. I'm not alone. Someone else understands. Someone else has the same experiences I do. It makes me feel terrible. Sometimes even hopeless.
Hopeless because if I'm not alone, why isn't there an answer? Why is it so hard to find a doctor that knows what my condition even is, much less how to treat it? If someone else out there is feeling the same thing I'm feeling, maybe it's not quite as rare as we think.
The answer is that while SOMEone has a similar experience to mine and the spoons available to write about it, my condition is still fucking rare. How rare? Who knows, since doctors don't generally learn about it in detail, so how would it get diagnosed? There's not a lot of money in researching treatments for rare genetic conditions. There's also not a lot of point in teaching doctors to be in the lookout for the one patient per 5 years that they might see who has this strange condition they might mistake for just another case of fibro to not look further into. What are the odds of them catching me?
The internet is a massive, beautiful, wonderful network. It can do so much good. It makes it so people from far away can connect with one another. Rare people with rare problems. People who understand that the Disney dub of Totoro is absolute heresy with limited emotional content, and should be banned entirely. Unfortunately, it can also put hope in my heart of finding a solution to my biggest, most jointfelt problems. It's crushing when that hope is dashed by yet another night being woken up by pain with no impetus, and therefore no prevention. So yeah. To those of you who write posts and articles and stuff just like this, I love you. Also, fuck you a little bit for giving me hope. But mostly I love you and I wish you the same things I wish myself: many spoons and so much less pain. I wish you answers. I wish you restful nights and understanding humans around you. I wish you excellent nearby doctors who listen to you and don't write "drug seeking behavior" in your chart when you're simply frustrated about being in pain for so long. I wish you to never again hear the words "have you tried yoga? You've got to stay healthy, ya know."
Don't get your hopes up though ❤️🥄
#InvisibleIllness #ChronicPain #RareDisease #EhlersDanlosSyndrome #Spoonie #GeneticDisorders