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Different Perspectives: Sharing your Alopecia Story with Friends

Posted by Thea Chassin

November 5, 2014 at 1:07 PM

share_your_story

If you have alopecia areata, you know how difficult it can be to speak with some of your friends openly about your alopecia.

Very recently while speaking with one of my cherished childhood friends, she told me about a friend of hers that she suspects has the condition. During our conversation, I was very curious to learn more about her suspicion and how it came to be. Most importantly, I wanted to hear her advice for men and women like her friend who have never mentioned why they look the way they do. 

She told me how she never thought much about the fact that he had no hair and no eyelashes, until one day when she was thinking of me and Bald Girls Do Lunch and began to put two and two together. As we are approaching the holiday season which includes more opportunities for socializing, I thought this was a great time to get a new perspective and to consider what some friends and family could be thinking if you have never brought up with them why you look the way you do.  By no means are we saying it is always appropriate to discuss your health in social situations, but we do hope you enjoy hearing from someone on the other side of a friendship and gain some valuable insights from our discussion.

Interview highlights and insights:

How long have you known the person you guess has alopecia universalis?
16 years

Is your relationship personal, business or a combination of both?
Both personal and business

What gave you the idea that he has a form of alopecia areata?
When I first met him, an associate of his mentioned that he had a condition where he would lose his hair periodically. Actually, I’ve never seen him with hair. 

Was there an “ah-ha” moment when you began to think there was something “different” ? What did you notice?
I had no “ah-ha” moment but, from the start, I did notice that he had no body hair as well as being bald.

Now 16 years later and in hindsight, would you prefer that he had mentioned something/anything in the intervening  years about why he is hairless?
I probably would have preferred that. My friend does joke about his baldness (easier for a male to do). I wonder if his joking is his way of not having to explain his medical condition.

How come?
I would have preferred hearing about his condition directly from him because of the nature of friendship, understanding, and trust.

Alopecia is so visible. In general does it seem in your opinion that a person with this condition should say something about it, even just once?
I do think mentioning it even just once is helpful both for the individual and for a broader understanding of alopecia.

Would you now consider ever mentioning it in the context of having heard of me founding BGDL?
Since I have known this friend so long and during these many years he has made the choice to not bring up his condition, I probably would not.

Do you have any words of advice for someone with AU who is deciding whether to mention their diagnosis or not?
I think a lot depends on the individual relationships. People do want to be accepted as they are. But in the end, I do feel truthfulness about a condition like alopecia can be very helpful.

I hope you have enjoyed hearing from someone we typically do not hear from in the context of the Bald Girls Do Lunch blog. Whether the information you read in the interview has inspired you to be more vocal about alopecia with those in your life or not, ultimately it is always a highly personal decision. We are not all like Alyia, a woman I interviewed, who is very vocal and physically "out there" about her condition and has a lot of advice for handling public perception and other topics. Again, there is no right or wrong approach, but perhaps this blog will inspire you to begin sharing your alopecia story with more people in your life.

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