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!

8 comments:

Jon Danzig said...

Clearly Ellen had the best of intentions, in mind and in heart, when approaching someone who looked as if they had acromegaly. However, this is a particularly delicate situation, and I feel it’s unwise to make definite assumptions – probably in all situations in life.

Not everyone who has acromegaly features will have acromegaly; that just may be the way they look. And many people who have acromegaly will not have typical acromegaly features. After all, the damaging effects of acromegaly usually take many years to occur, and it’s surely a shameful failure of modern medicine that most acromegaly patients are still not diagnosed before the condition becomes noticeable to the trained eye.

On the other hand, this also means that most people with acromegaly in the world are yet to be diagnosed*. So, there is a greater chance than not that any passer-by with acromegaly doesn’t yet know it – which makes the initial approach so much more difficult and sensitive. That also, though, creates a duty upon those of us who have “the knowledge” to inform whenever possible, because it could save a life.

It takes a brave and kind person indeed to approach a stranger on such a delicate issue – and I commend Ellen for her efforts. There is always the risk of being rejected or rebuffed from such an approach, however tactful. But the possibility of helping to diagnose someone earlier than they might have been is just too compelling an opportunity to pass up, even if there is the possibility of offending, and even if the initial assumption turns out to be wrong.

So, well done to Ellen.

*See news report: “Millions might unknowingly suffer from growth-hormone disorder”

http://www.healthcanal.com/disorders-conditions/20455-Millions-might-unknowingly-suffer-from-growth-hormone-disorder.html

TDVMAAT said...

Hi Ellen,

First, let me say that I really want to thank you for sharing this story, and that you certainly asked some excellent questions.

I don't know one way or another if I would ask a stranger that appeared to have Acromegaly, if they had it...I believe my decision would all depend upon the situation.

Like Jon said, it could save a life .

You were coming from a pure place when you asked and I think it's awesome that you took that chance.

miss magpie said...

Hi!

I think you did well. When I first met my father-in-low (boyfriend's dad by then) I was shocked at how he looked and I had to ask my boyfriend if he had always been like that. His dad has a very big "soft" nose, giant hands and thick lips. Luckily, he said his dad has always been like that. If I hadn't been able to ask my bf, as if his dad would have been a stranger on the bus, I would have approached him directly. I think that a rude "no, I'm not sick, go away" is way better than letting a potentially sick person undiagnosed for so long.

Ellen said...

My friend has Cushings, sister syndrome to Acromegaly. She had experienced 8 years of dealing with her disease when we met and spent 10 days on vacation together with mutual friends. During that 10 days I complained/explained my weird symptoms and frustrations (weight gain, fatigue, acne, body hair, changed body features, etc) and she STILL didn't say anything. Knowing how 'rare' acromegaly is supposed to be, she thought she was being paranoid and 'seeing' pituitary tumor symptoms in others. That vacation was in June, I was diagnosed in July, but it could have been YEARS later! I would NOT have been offended if asked if I had a problem; more like relieved. All my friends were too reassuring saying things like "Oh, it's just age. I feel it too" or "you look exactly the same, I don't see any problems" or "oh, it's just those female hormones, we all go through it". Out of an attempt to be kind they all tried to persuade me I was normal and fine. So, YES, say something. Speak up, because their friends are not going to.

Rowen La Briev said...

You did the right thing. Personally, I have all symptoms of Acromegally and have since I was a teenager. Unfortunately I can't get diagnosed. I am since disfigured, with failing eyesight and severe joint pain, still-no diagnosis. You were doing that man a favor because now curiosity will cause him to look further. I only wish more people were familiar with the disease. People wouldn't treat an amputee or other disabled person with the same harshness and humiliation as someone who has bee disfigured by Acromegally.

acromegaly said...

Ellen,

You did right! The most important thing is that you give that person an option to go and see the doctor.

I've told about four people that I suspected they had acromegaly, and one person that I suspected had Cushings.

It's very awkward and embarrassing to tell someone, so you were very brave. Well done.

Trys

luke mccann said...

Hi Ellen, I would like to say that it is worth the risk of offending people by cautiously asking someone if you suspect acromegaly. It's so unheard of and many people like myself do not even know they have it for years!

I was working at an old couples house once and the wife was a doctor who obviously noticed some features of acro. The next day i had the husband awkwardly trying to hint to me about it which was quite funny in the end because I knew exactly what he hinting towards but I had already been diagnosed by this point.

The point is I am happy they tried to tell me because I might not of known! I am doing well now though, wish I could share doctors notes with someone I met on the bus! Haha anyway great story take care, luke

Starbucks Addict said...

I think you did a great thing Ellen! Possible insult, or possibly saving a life? The choice seems clear. I wish I were so brave. I've seen a few people I thought might've had Acromegaly, but I just wasn't sure. I was afraid I was seeing things that weren't there.