Dealing with a diagnosis


12 Years
Jan 6, 2011
Crunchy California
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.
I can not possibly begin to understand what you're going through since I have never had your diagnosis. You seem like you are a strong enough person to get to this point. I would only say don't let the negative people drag you down and focus on the positive ones.
At least now you know what is wrong. It took over a year for me to get a diagnosis of what I have. See if there is some sort of support group, even though it is a rare disease, there may be some kind of group that you can go to. Try to ignore the nasty people, I know it can hurt dealing with them. If only they could spend one day in your shoes. Good luck
Thank you. It is difficult, but I'm working through it. I really want to say something snarky back at Nastie #1, but I need to bite my tongue. I might leave it at "Thank you so much for the support." Those that know me well enough will see the sarcasm...
You know what??? It is YOUR blog and you can say whatever you want!!! Like "haters have no place here, move on". ACK!!! I wanna throat punch someone that was rude to you about your condition. Hold me back!!!
Idiot morons!!

Ok, please tell us more about this condition. It is new to me.
I had the same problem with people when I was diagnosed with Hyperemesis gravidarum. If it isn't a common disease, people don't understand, and they seem to like to jump to conclusions. I really can't help you on how to deal with them, because when members of my family were nasty to me, I cut all contact with them.

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