A pituitary support group?

SupportI have just left a meeting of the Leeds branch of the Pituitary Foundation – apparently a support group.

I want to preface my comments with a very clear statement that none of what I have to say below is intended as criticism of those who were there and those who give their time freely to organise and support the group. It clearly meets the needs of some people.

I almost wish I had not gone. I do not feel supported at all. I spent about an hour listening to stories of what went wrong, trouble getting the right drugs from the doctor, general practitioners who did not even know what an adenoma was etc amidst all this the very occasional reassuring comment along the lines of “I had mine done 20 years ago and I’m still here”. Well I knew that was going to be the case anyway.

Maybe it’s because I am better informed than many others, maybe it’s because I am relentlessly optimistic, maybe it’s because after treatment I do not expect to be on medication, maybe I had very different expectations regarding what the group was going to be about. Whatever the reason I felt totally out of place in this group of people with whom I might have expected to have some rapport.  It seemed much more like a little social gathering than any real opportunity to exchange information (which is what I hoped for) and perhaps that is something that some participants needed. I don’t have that need and whilst I will give it another go, and suspect I will turn up in the future when there is a speaker, I don’t feel the need for social support of this nature.

I would have simply liked to have had a chance to introduce myself to the group, I would have liked the chance to explain what I needed from the group, I would have liked the chance just to tell my story so far.

Right then, back home to watch the rugby and find a support group to help me get over my experience at the support group!

One response to “A pituitary support group?

  1. Interesting feedback Geoff, and it is why I have yet to attend my local support group. I have promised myself that I will attend one, my next local group meets later this month. Part of the reason I wanted to do my blog was to report back on the initial part of the diagnosis process and the operation and recovery, in case anyone found that useful. But I also wanted to get the story out there that once I got over the initial few months of recovery I have returned to a perfectly healthy version of me. Yes I feel much fitter and more positive mentally and yes I take a couple of tablets each day (Hydrocortisone) and an injection every 10 weeks (Testosterone). So my story is a happy one, I’m sure there are plenty of others, but I do worry that the support groups contain a higher percentage of people for who things didn’t go so well. The pituitary gland does seem to affect people in such a variety of ways. Anyway, ramble over! Cheers, Carl

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