Dealing with a diagnosis

Discussion in 'Family Life - Stories, Pictures & Updates' started by classicsredone, Mar 11, 2011.

  1. classicsredone

    classicsredone Chillin' With My Peeps

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    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.
     
  2. paddock36

    paddock36 Chillin' With My Peeps

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    [​IMG] 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.
     
  3. Hillbilly Hen

    Hillbilly Hen Overrun With Chickens

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    [​IMG] 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 [​IMG]
     
  4. classicsredone

    classicsredone Chillin' With My Peeps

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    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...
     
  5. ChickensAreSweet

    ChickensAreSweet Heavenly Grains for Hens

    Quote:Yes- it is all their bad if you are not getting sucked into the conversation with them.
     
  6. debilorrah

    debilorrah The Great Guru of Yap Premium Member

    Quote: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!!! [​IMG] Idiot morons!!

    Ok, please tell us more about this condition. It is new to me.
     
  7. sweeterdeeter42

    sweeterdeeter42 Chillin' With My Peeps

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    [​IMG]
     
  8. EmtheFishLady

    EmtheFishLady We're all mad here Premium Member

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    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.
     
  9. classicsredone

    classicsredone Chillin' With My Peeps

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    Oh hyperemesis? I had that when I was pregnant, and I wouldn't wish it on my worst enemy.
     
  10. EmtheFishLady

    EmtheFishLady We're all mad here Premium Member

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    Glen, MS
    Quote:Yup. It's HORRIBLE. I was miserable for 9 months.
     

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