what we can learn from carolmarie

BFS Online Support Group

Moderators: JohnV, Arron, garym

what we can learn from carolmarie

Postby erika on September 7th, 2003, 12:19 am

I think no matter our opinion about carolmarie and her posts, we are all glad to hear that she hasn't been diagnosed. I do appreciate her recent posts though, because she said a lot of things that I relate to and I think those things are important to talk about.

To me, the most important part of her recent post was when she said, "I got so angry and hurt because after hearing it from one doctor after another and then from one of the BFSers who doesn't even know me I just lost it and now you know the rest of the story. That is why I said I had been diagnosed. I really haven't been but I know I have it."

There have been many times when I have been absolutely convinced that I am dying of ALS, no matter what anyone says to me. and in those darkest hours, I thought some pretty messed up things, including the wish that I could be diagnosed as a definitive "I told you so" to all of those people who had dismissed my suffering. So that they all would think "wow, she did have it all along."

I am horrified and ashamed that I ever thought something like that. But it is a basic human need to be taken seriously. After suffering through not only the symptoms of BFS but the terror of thinking you are dying, it is unbearable to have people tell you nothing is wrong.

I sympathize with carolmarie and I completely understand her need to claim that she was diagnosed. she needed to ensure in her mind that people were taking her symptoms seriously. I don't condone her lying about her diagnosis though. I just think that she gave in to a very basic human need that I myself have struggled a lot with. and because I'm so embarassed by those kinds of thoughts, I think it's even more important to share them with other people.

just my opinion. any thoughts?
Posts: 21
Joined: August 25th, 2003, 7:26 pm
Location: Los Angeles, CA

Postby kim on September 7th, 2003, 9:40 am


Although I never wanted the diagnosis. I felt certain that it would eventually come. I (like Carolmarie) saw Doctor after Doctor. Had test after test. And although each time I was told it was a benign condition probably caused by anxiety or depression, I was sure they were wrong. I spent months doing this. How could all these physical symptoms be caused by anxiety? They are progressively getting worse, it can't be stress related! (I thought) I would cry and get so angry because I thought they were being so unsensative. I thought they were dismissive and condesending. I thought they were all a bunch of overpaid under trained a-holes! Although this may have been true, I had to find out what was wrong with me!

Until finally after the umpteenth Dr. gave me the same scenerio, I decided to prove them wrong! I would follow their advcie and treat it as such. Take my anti-depressant, take my anti-anxiety pills, seek council, relax, try to think of it as benign, accept, not worry etc. etc. Then, after giving it the old college try, I would go back to them and say.."You see, I was right! I DO have something physical, something horrible.

But, the funny thing is, that never happened. I did get better. Slowly but surely. And the better I felt, the more I was able to convince myself that the Dr.'s were right. (They were still A-Holes) But they were right. It took months, but I was getting better. My symptoms were leaving me. No more pins and needles, no more numb extremities, no more slurring, no more heavy arms and legs, no more weakness, cognitive skills went back to normal, twitching became bearable, and finally became almost non-existant.

Today (1 year later) It has been over a week since I have twitched at all. I am convinced that I am fine. I still hate my Dr.s but I am happy I finally listened to them!

Maybe Carol should give it a try, what could it hurt?


p.s. In defence of my Dr. friends, not all are bad. I just happened to go to all the ones who completely lost their bedside manner. Or were missing the sensativity gene.
Selfless giver of time
Selfless giver of time
Posts: 157
Joined: January 5th, 2003, 6:46 pm

Postby reneeintx on September 7th, 2003, 11:18 am


I'm so sorry you had that experience with your doctors :( at least they were right and you got better, even though they told you with a hardened heart.

My doctors know I'm a hypochondriac..especially my gp. If I go in for something and I'm convinced it's bad, she gets the ball rolling for me to see a specialist. Two years ago I had a swollen lymph node in front of my ear and thought I had lymphoma. She got me in to see an ENT doc and he did a needle aspiration on it. It was benign like both of them had said, but I didn't believe them. I didn't care that my forehead had a bug bite there(spider bite is my guess, because it had two tiny *beep* marks, similar to a fang puncture, hell...it couldn't been a darn snake for all I know!!)

They both told me the node was swollen from the infection, but NOOOO I wouldn't believe either one of them, but was convinced with the node aspiration biopsy. The node disappeared. Well, what do ya' know!! ;)

I sorry you didn't have more compassionate doctors. I'm also sorry if I'm offending anyone here, especially any male doc's reading this...but my gp is a women, and my experience with her leads me to believe women doc's are more compassionate.

I'm glad you're feeling good with very little twitching.

Selfless giver of time
Selfless giver of time
Posts: 185
Joined: January 23rd, 2003, 11:33 am
Location: deep in the heart of texas



Return to The Support Group

Who is online

Users browsing this forum: No registered users and 6 guests