I realised the other day that there are quite a few of us undiagnosed who post on this forum. What struck me was the patience and support you can receive particularly for those undiagnosed. I know it's often difficult when you are undiagnosed and still need to voice concerns, thoughts, symptoms.. And I think it's brilliant that on this forum - undiagnosed members can take part and feel welcome too.

Whether those undiagnosed ever find a diagnosis or not - I think the support on here for whatever ailments, concerns or worries is invaluable.

Being undiagnosed you often feel a fraud. But this place helps you feel included. It helps. 

So just a shout out there to say thanks for being patient with me (us)!


6 Replies

  • Since I clicked on your Like tab here yesterday, have  been thinking about your vvvv moving post, trueman....& now you have 11 likes: that's A LOT: clearly your post has hit the spot with many of us here...I wonder if there are any of us who, even after diagnosis, don't continue to feel haunted by their experiences pre-diagnosis....and I wonder how many of us continue to feel vulnerable to the whims & fancies of the health system post-diagnosis.  my feeling is that we're all in this together...and I'm so glad you & other undiagnoseds are here with us: you inspire me and give me the courage to hang on in here...whatever the system throws my way....our wonderful forum is my rock, and this includes everyone here - diagnosed or not...so I'm thanking all of you seeking diagnosis for being here too

    🍀🍀🍀🍀 coco

  • Oh I never thought about that - after being diagnosed - still having concerns and feeling vulnerable or the fact all those years of not being diagnosed - this still having an effect on how you deal/manage your diagnosis etc. What a good point! Thank you. 

    I guess it's safe to say we all feel vulnerable perhaps misunderstood or unable to voice our concerns for whatever reason. And the forum helps you to do this without judgement which is often so important to our own sanity!

    Also the amazing amount of knowledge and experiences that is shared here is comforting and informative. I click on your links a lot! 

    Then there are the gentle posts that muse about the simple things in life.

    Wonderful and calming. 

  • So true...you put it all beautifully

    I know I've been traumatised by the nearly 40 years I spent with the system diagnosing & treating only what we now know are secondaries.  

    Even though my version of underlying "primary" immune dysfunction & connective tissue disorders are now quite well "labelled" & responding v positively to treatments, I continue to feel an insecurity that I know was born during those 40 years of the system ignoring the causes underlying those secondaries.  If they could miss the underlying stuff all those years, what are they missing now?  

    You're so right: those gentle calming posts are precious: soothing anxiety, promoting mindfulness

    And just as precious, to me, are the funny posts..for sure, I'd never have survived without humor 😉 

    👏👏👏👏 coco

  • Sorry late responding.. Yes I can really associate with 'if they miss the underlying stuff.. What are they missing now?'

    My mum died of encephalitis (what was on death certificate) but they weren't really sure, treated for meningitis for a bit. They tried their best but never really knew what was suddenly wrong with her. My partner was misdiagnosed for a year GP thinking piles - 'def not cancer'- was the problem until they discovered stage 4 non hodgkins cancer was culprit. When diagnosed said he wouldn't lasted another 6 months. So I can relate to those have misgivings about diagnosis or no diagnosis. Perhaps it affects me with my own perspective. I struggle with the 'you seem fine' compared to the 'I know I am not fine'. It's such a balancing act - trusting medical judgements, writing off things as anxiety and listening to how your body feels..

    Sorry that was all a bit long winded.

    But I can see now how even after a diagnosis you can still have concerns, vulnerability.. Particularly if you have experienced problems/doubt/struggled to reach the point you are at.

    Guess it makes you stronger?

    Edit: interestingly I only recently found out later that my mum supposedly had an autoimmune issue which they found out during the weeks before she died - it was mentioned to my brother but at the time he did not find out any further info as she was so ill..

  • There it is! Exactly: well put! And very sad...am feeling for you & your family....I think these experiences are one of the things that bind us together here...perhaps my most novel example of this was the 14 year old malignant tumour in my hand all medics had diagnosed as arthritis until a brilliant ortho surgeon (who'd just arrived at our small local hospital from kings in London) recognised it for the rare cartilage tumour it actually was...and performed an emergency amputation. the research rheumatologist who did my last BILAG review this year told me they think that having had a malignancy is significant to immune dysfunction. Hmmm....

  • You voiced my feelings very well.

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