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Agreed I have syringomyelia which causes intense pain and on a bad day I limp (imagine walking with your leg encased in water close to boiling point). On a goo

Agreed I have syringomyelia which causes intense pain and on a bad day I limp (imagine walking with your leg encased in water close to boiling point). On a good day you can't tell. I still cycle and swim and am in better than average physical shape for 37 but as soon as I tell someone it all becomes about my (mild) disability. The drugs work and I live a normal life but they come with significant side effects. Some of them are funny (they use gabapentin off label to treat premature ejaculation - so I had to explain that one to my GF early on), they also make me wooly mentally, it's not a bad feeling but I'm a bit of a space cadet for a while after they kick in.

scotty79 9y ago
> ... but as soon as I tell someone it all becomes about my (mild) disability. People are horrible at interacting with their acquaintances or even friends (except for closest ones). When they meet a friend they look at him and think, "what the hell I'm supposed to say to this guy", then they remember that he wanted to buy a house, great!, now they can talk to them about that ... he already bought a house, great they still can talk about the house, but after a year or so this topic gets stale. If someone broke a leg, they can talk about the leg, but then the leg heals up and what do you gonna talk about then... You are very pleasant conversation partner for them because they always know what to ask you about. Don't get mad at them. The reason they bring this up every conversation is not about your specific problem, it's about general human problem of not knowing what to say to another human.
coldtea 9y ago
>I still cycle and swim and am in better than average physical shape for 37 but as soon as I tell someone it all becomes about my (mild) disability. To strangers that might not understand (or take multiple meetings to see that's not a problem), it might be better not to tell at all. For people one actually know mid/long term, it's easier to be open without the prejudice. (This sounds very House MD).
- noir_lord 9y ago
  The my prognosis is good, the pain is mild to severe but with medication mostly under control. It doesn't actually impair me physically but the pain makes me not want to move, sometimes it's just gritting my teeth and getting it done. Given the rareness and potential severity I got off damn lucky, I have to remember that occasionally.

scotty79 9y ago

> ... but as soon as I tell someone it all becomes about my (mild) disability. People are horrible at interacting with their acquaintances or even friends (except for closest ones). When they meet a friend they look at him and think, "what the hell I'm supposed to say to this guy", then they remember that he wanted to buy a house, great!, now they can talk to them about that ... he already bought a house, great they still can talk about the house, but after a year or so this topic gets stale. If someone broke a leg, they can talk about the leg, but then the leg heals up and what do you gonna talk about then... You are very pleasant conversation partner for them because they always know what to ask you about. Don't get mad at them. The reason they bring this up every conversation is not about your specific problem, it's about general human problem of not knowing what to say to another human.

coldtea 9y ago

>I still cycle and swim and am in better than average physical shape for 37 but as soon as I tell someone it all becomes about my (mild) disability. To strangers that might not understand (or take multiple meetings to see that's not a problem), it might be better not to tell at all. For people one actually know mid/long term, it's easier to be open without the prejudice. (This sounds very House MD).

noir_lord 9y ago
The my prognosis is good, the pain is mild to severe but with medication mostly under control. It doesn't actually impair me physically but the pain makes me not want to move, sometimes it's just gritting my teeth and getting it done. Given the rareness and potential severity I got off damn lucky, I have to remember that occasionally.