as small as a world and as large as alone

2:00am July 24, 2014

bittersnurr:

soilrockslove:

portmanteaurian:

I’m skeptical about the idea that people can appropriate disabled experiences in the same way they can culture

Like…if you experience something that is similar to my experiences, and that is similarly debilitating

I don’t care if you have the same Disability Label I do, we still have a bond there.

Especially for psychiatric stuff, where diagnosis is mostly just based on identifying a collection of symptoms? If you have one less symptom than you need to earn the label, it doesn’t make the symptoms you DO have any less real

Clatterbane:

#seriously  #also they’re generally shit at recognizing patterns  #and applying appropriate labels  

And besides all that - if you have certain experiences, you have those experiences.  There’s no way you can be “appropriating” them.  They are happening to you and you can talk about them.

And if certain ways disabled people make their lives better also help you - it’s ok to do them!

(Of course there are ways of being a dick when talking about disability, and it’s better if people avoid being a dick.  But that’s a separate issue)

I only have been able to find one actively posting person who talks about mitochondrial disease on tumblr and one who is in the process of getting a diagnosis who I would be shocked if they didn’t have it.

Mito is a lot like autism in that the majority of the support is aimed to parents and there is very little out there for adults. I once went through 30 pages of google search for mito blogs and I was again, only able to find one that was both active and not run by a parent.

So what do you do then?

Well first I had an erythromelagia diagnosis so I followed people with neuropathy. (erythromelagia specifically is also hard to find support for, the yahoo group at least is active though) I made 1 EM friend and a bunch of friends with CRPS.

I followed people for hypermobility as well as EDS

I followed people with dysautonomia because I have those symptoms too

I followed people with developmental disabilities and sensory issues for those aspects of my illness

I broke everything down into the symptoms, and found people who had similar ones. And by doing this I have filled my dash with people like me who post relatable posts and make me feel less alone even if it’s not exactly the same.

And it’s comforting because there is still people who understand and that’s really important for when you come home from dealing with a world that doesn’t.

Yes I’ve done stuff like that too.

BTW I might have mito disease, we just don’t know yet.  I’m in the process of getting tested, and it’s really a big “we don’t know” as to whether I have it, because the symptoms could be accounted for by other things I have, such as adrenal insufficiency and neuromuscular junction disease.  But at the same time, my neuro says that mito disease could account for a huge number of seemingly separate things I have, so I think I’m getting a muscle biopsy soon.  Then at least I’ll know.  But I honestly think it could go either way – people have been wondering for years, but never tested me because there were so many other things to test for and they didn’t want to do something invasive for no reason.  If they finally test me soon, I’ll let people here know if I have it or not, especially since you seem so alone with it here.

I do have hypermobility, which may be the same thing as EDS (and there may be some form of EDS running in my family, especially now that my mom is showing organ symptoms that could be related to connective tissue disorders).  I have dysautonomia.  I have developmental disabilities and sensory issues.  And I have neuropathy.

(Also, gastroparesis, adrenal insufficiency, some kind of neuromuscular junction disorder, and a shitload of other stuff.  It’s the shitload of stuff in general that’s making them suspect mito disease.)

So whatever the test results show – I’ll let you know, and if they’re positive, at least you’ll be less alone.  :-/  I have a feeling it’ll be negative, and my symptoms explained by a cluster of other diseases, but you never know, and I do wonder sometimes if mito disease would explain a lot.  I was told ages ago, at a time when I was almost dying but didn’t want to admit it, to get tested, and never did because I was afraid to ask.  And also because at the time it was almost a fad to consider autistic people to have mito disease, because of a high profile court case that people pretended had something to do with vaccines and shit.

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