I was recently diagnosed with Stiff Person Syndrome. For years I've had rigidity and muscle spasms that have gradually worsened. I've been from doctor to doctor, trying to find a reason for it. I finally got in with the director of Neurophysiology for a hospital chain in our area. He's awesome, and I'm glad to have a treatment plan finally. I won't be cured, but being understood is better than nothing.
My family and friends have been mostly absent the past couple months since I was diagnosed. My dad, a couple friends, and a cousin have been there for me, along with my husband. Everyone else...I'm sure that they care, but they haven't really shown it. I have a big family and a lot of inlaws, and there have been a few that are being especially nasty to me since this diagnosis. I try to avoid them, and I'm pretty sure it has a lot to do with their own insecurities.
I wrote an explanation of the diagnosis, what it means, and how I'm doing on my blog. Most don't really understand it, and I understand. I wrote how I can't just suck it up and push myself, because it just doesn't work like that. The diagnosis is something like 1 in 1 million. That's why I wrote the blog. One of the "nasties" has written a couple very public statements about me this past week. In harsher words, they said that I complain all the time, I need to suck it up, that these are nothing but normal aches and pains, I need to get back to work, etc. (Heck - my doctor said to just bring him the disability papers, no questions asked. It is that bad.)
So, how do you deal with the nasties like this? I can't completely avoid them, even though I do try.
My family and friends have been mostly absent the past couple months since I was diagnosed. My dad, a couple friends, and a cousin have been there for me, along with my husband. Everyone else...I'm sure that they care, but they haven't really shown it. I have a big family and a lot of inlaws, and there have been a few that are being especially nasty to me since this diagnosis. I try to avoid them, and I'm pretty sure it has a lot to do with their own insecurities.
I wrote an explanation of the diagnosis, what it means, and how I'm doing on my blog. Most don't really understand it, and I understand. I wrote how I can't just suck it up and push myself, because it just doesn't work like that. The diagnosis is something like 1 in 1 million. That's why I wrote the blog. One of the "nasties" has written a couple very public statements about me this past week. In harsher words, they said that I complain all the time, I need to suck it up, that these are nothing but normal aches and pains, I need to get back to work, etc. (Heck - my doctor said to just bring him the disability papers, no questions asked. It is that bad.)
So, how do you deal with the nasties like this? I can't completely avoid them, even though I do try.
