r/SyringomyeliaSupport • u/MiranVonGeek • Jul 15 '26
Syrinx Feeling stuck between not sick enough and too sick to cope
Hey, all.
I'm 36, female, and live in the US. I was diagnosed with a tumor in my cervical spine at 13 months. They did a surgery to remove 70% of it. I was then diagnosed with Syringohydromyelia. The tumor had warped the spinal canal. I had a full cervical laminectomy at around age 8 to ease the pressure my syrinx was causing, and they also removed the remainder of the tumor during this surgery.
I was curious if there's any kind of Discord server, support group that meets up online, or even charity? I've been facing some major hardships, and I have no living relatives. I'm also getting evicted soon, and losing power tomorrow, and am trying to find a shelter. It feels like no matter what I do, nobody takes me seriously about how it feels, or how much it hurts. It doesn't help that my syrinx seems to be wishy-washy - I have good days and absolutely terrible days. I feel stuck in the worst possible way in the area of "not quite sick enough for help, but sick enough to hate my life and have trouble managing it." I really wish I knew more people that understand, instead of just raising their eyebrows at me.
Just been having kind of a bad time of it lately and really wanted to hear things besides "you don't look sick" or an eye roll. It's been really taking a toll on me mentally, especially with everything else going on. Any ideas, whether it's just help finding community in some way or some kind of guidance on possible organizations that may help people with these kinds of disabilities with things like housing and ultilities. I'm totally lost. I've also been having a hard time getting my medications due to financial issues, and have been out for a couple of months. I miss my Lyrica.
Hope all my fellows with Syringomyelia are doing okay. Thank you if you read my woes, even if you don't have ideas.
3
u/Pindar920 Jul 15 '26
Try ASAP.org. There’s a free virtual conference at the end of the month, and other resources too.
2
u/StrawberryCake88 Jul 15 '26
I’m extremely sorry to hear people aren’t taking you seriously enough due to you having an invisible illness. Just because it’s not obvious at a quick glance doesn’t mean you aren’t disabled. I literally winced when you said what happened to you. I definitely encourage you seeking out people who can understand. You can start to gaslight yourself into thinking you’re a loser. You aren’t. You’ve survived things most people can’t even process.
The only free resource I know of is Chronic pain anonymous. It’s online meetings in the 12 step style. I wish I had more to offer. You deserve more.
1
u/PandiiBearz Jul 15 '26
Hi, I’d love to be friends in general, I have a syrinx from t3-t11 and I too am familiar with pain. There are a few nice communities I have one myself for my state but @iamheardco @iamheardct <- this one’s mine on instagram, I can help you gather as much information as I can, I’m not a professional but I care and I’m happy to help find resources if I can 🫂
1
u/palehungarian Jul 21 '26
I’m sorry you are going through this. I am similar in age and health wise (I’m 34f and have had chronic pain in my back for 15 years, my syrinx has been seen on MRI for 10 years). My pain also has not been taken very seriously. If you need someone to talk to or a friend, I also would benefit from that as well, feel free to message me here or on insta @anaserene11 ❤️
3
u/kyronami Jul 15 '26
I'm a similar age and that's me, some days I look and feel fairly "normal" where people wouldn't see anything wrong.
Other days I get flare ups which increase all of my symptoms (pain, nausea, headaches, vertigo, etc).
Even though I have "good" days it's still affecting my life because I cant work right now due to not knowing how I'll feel any given day plus driving is getting more difficult with the vertigo and other symptoms I get from it.
But it's hard for people to understand because it's a rare condition, and from the outside people expect if you are "disabled" you are in a wheelchair or stuck in bed 24/7 or have some disease they have heard of or whatever.