I wrote about all of you on my blog

[dahlfacepoet]

I'm participating in a 30 post in 30 days Health Activist Writers Challenge, sponsored by WEGO Health.

I love everyone of you one this forum but especially in the Undiagnosed Club. You have all helped me in some way or other and I think everyone needs a group of people like you. That's basically what I said, here http://thecrypticcripple.tumblr.com/post/47137147115/resources-for-the-undiagnosed

I just wanted to share with you the post to let you know and thank you for all that you've done for me. I don't what I would have have done without you.

 

[UnXmas]

I went over a decade with two different conditions undiagnosed. I still have some symptoms that don't belong to either of my diagnoses. Ironically, it was when I stopped caring about diagnosis that I was correctly diagnosed. It was such an anti-climax. I'd thought a diagnosis would mean doctors would take me seriously, that I'd understand what was wrong with me, and that I'd be able to explain my illness to others.

Doctors still dismiss me or try to tell me my problems are psychological, I still don't really understand my illness and can't know my prognosis. As my conditions aren't curable, diagnosis has not brought successful treatment.

I think you're absolutely right that being diagnosed does not provide entry to a community. There are enough people here struggling to get diagnosed to create a community all of their own, and everyone here shares the experiences of dealing with doctors and dealing with symptoms, no matter what their diagnosis.

I'm not sure about the research aspect though. I think I had a tendency to self-diagnose, always getting it wrong. And few doctors appreciated my attempts to research my symptoms - if they didn't know what was wrong with me, they weren't about to let me suggest possibilities to them.

 

[Cat-a-Tonic]

Aw Dahl, thank you. That's lovely. We're here for you anytime.

 

[dahlfacepoet]

Thank you for the response Unxmas! That was super nice of you to take the time to read it and make a reply.

I understand your experience with research. I research and research, but then am too shy or passive aggressive (not sure which one) to tell them what I think and make judgements on them behind their back. It's probably not the best way to go about things. I don't even print out articles like it says up there, but that's what everyone else says to do, so I thought it was good advice to pass on.

I have more in depth posts about why it's important for me to have a diagnosis. Besides hopefully getting treatment other than 150mg of Tramadol, I really need a name for this beast. I can't give up this early on.

Cat, you are the sweetest ball of human in the world. I hope everything is going well for you. How have things been going for you?

 

[Cat-a-Tonic]

I somehow missed seeing this post. Thank you Dahl, you're very sweet too. I am doing pretty well overall. My presumed IBD is in remission, and I'm working out every day. Regular exercise has done so much for my mood - I rarely feel depressed anymore, and when I do it only lasts a day or so. I'm getting stronger inside and out and it feels great. My GERD is still pretty active and my arthritis seems to be getting worse, so my health still has some ongoing issues, but overall I can't really complain. The IBD is quiet except for when I eat something I shouldn't, so as long as I stick to safe foods, I usually feel quite well. I still don't have a proper diagnosis either, but my GI and I both agree that it's silly to run more tests when I'm in remission (if nothing showed up on tests when I was flaring, I highly doubt anything would be found in remission!). So I'm in indefinite limbo as long as I'm in remission - not terrible, although as you said, it would be nice to have a name for the monster, so that I can better know how to fight it when it does wake up.

 

[gatheringroses]

Thanks for the post. I enjoyed your blog entry. I know I've only been around for a short time, but knowing that there IS a community for people experiencing similar struggles has been so helpful.
"Though you don’t have a diagnosis, they will be welcoming and offering of support. That is what we need most (you know, besides a fucking diagnosis). We need to find people that can empathize." - Well said.

 

[gatheringroses]

Oh, Cat, glad you're feeling better! I hope that it lasts a long time. Or, if you do get sick again, that you can get some answers.