Wednesday, August 22, 2012

I just met you, and this is crazy...

I was riding the bus today (coming home from the rheumatologist, in hopes of finding some joint pain relief) when a gentleman boarded that I thought looked like he definitely had acromegaly.  I was so excited when I saw him, because how often do you meet someone else with acromegaly in real life?  I imagined becoming friends with him and starting a local support group.  We could compare notes about our doctors, talk about what kind of treatment options we are pursuing, etc, etc.  Basically all the things that people are doing in support groups online, but in person!

I didn't want to make him feel self conscious though, because I can understand how someone out of the blue talking about a very personal health issue could be disconcerting.  I remembered that I happened to have one of my acromegaly business cards on me, so I wrote my email address on the back, along with "I have acromegaly too!" on it (and also the URL for this blog).  I was very nervous about approaching him, because sometimes it's weird to reach out to a stranger like that.

I worked up the nerve to say hello to him, and I said something like, "I just met you, and this is crazy, I have acromegaly too, so email me maybe."  Well, not quite, but something like that.  Anyway, he said that he had never heard of acromegaly which really surprised me because I was sure that he had been diagnosed already.  He was reluctant to take my card, but I awkwardly stood there holding it out until he finally took it.  

Anyway, person I met today on the bus, if you are reading this: I'm sorry if I made you feel uncomfortable.  I hope you realize that my intentions were good and here was my rationale:
  • I have often felt so alone dealing with acromegaly that I thought both of us would benefit from having someone to have someone to talk to about it locally.  
  • If you really don't know what acromegaly is, maybe you can look into it and our encounter today will lead to improvements in your quality of life.  Most people (myself included) go undiagnosed for years and years, but the earlier you are diagnosed and start treatment the better the outcome.  I personally wish I had been diagnosed earlier.  
  • If you know you have acromegaly and you just didn't want to admit it because it's something very personal to talk to about it I respect that.  Sorry if I made you feel self conscious about it.
  • If you have already been checked for acromegaly and you don't have it, please don't take offense, I hope you'll understand that I was just trying to help. 
So I have a question for all of you readers out there -  do you ever look at other people and recognize acromegaly in the general population?  Do you ever feel tempted to say something, or has anyone ever said something to you?  Do you think it is worth potentially offending someone if on the other hand it could lead to an earlier diagnosis?  What is a tactful way to approach the topic, or is there even one?  Leave a comment below with your thoughts!

Thursday, August 16, 2012

Great Discussion on PituitaryAdemoaner

Emer of wrote a very thoughtful post about the recent lawsuit by a woman who went untreated for acromegaly for several years because of lack of diagnosis by the NHS.  There are several very thoughtful comments in response to her article as well - you should check it out!