I'll let my head speak for itself

I had an interesting thing happen to me last night. I was out with my partner, Phil, and an old friend of mine, and we started talking about relationships. My partner and I started the conversation by talking about how we argue often and can both be difficult people at times - he has his reasons, I have mine. Then my friend joined in and started telling Phil that there's no way that I can be that difficult, because a) I come from a really supportive family, and b) I've never had to deal with any major issues or difficult experiences in my life....While I know that her comment came from a personal place for her - she's had many deeply challenging personal and familial experiences in her life - I felt confused and hurt by her comment. I've lived with alopecia almost my entire life, which means I have and have always had many day to day, as well as enduring challenges to face. My gut reaction was: is my life with alopecia not a "major issue" or "difficult experience?", have I not been challenged by alopecia? Don't get me wrong, I'm not looking for reasons to be able to say I'm a difficult person...but I just felt in that moment that my alopecia did not exist at all. It was weird for me to think that others don't realize just how life-altering it can be to live every day with alopecia. I think it confused me most, because it seems so obvious to me: my difference, my life and all its challenges, are always right there for everyone to see. Doesn't my head speak for itself (pun intended!)?

So I guess what I don't fully understand is how others can so easily overlook or look past the struggles and the pain I often feel as a result of living with alopecia. It's interesting, because I actually think what people see is strength, resilience, and confidence, and so make the assumption that I am not affected by my alopecia. Ironically, however, that strength, resilience, and confidence that I do have comes from dealing with all of the struggles, all of the challenging moments, and all of the discomfort I have felt at various times over the last 23 years with alopecia. I am, in so many ways, my alopecia. I have had a hand in shaping its life course, and it has done its part to shape mine. So whichever way you look at it, I am and will always be in a very intimate relationship with alopecia...

And yeah, I think that's enough to make me difficult sometimes ;).

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Comment by Susan on March 15, 2008 at 11:36am
I can truly tell you that while I still have hair, losing 50% of it has been the hardest emotional thing I've gone through in my life. However, I am been enlightened by this website. It makes me realize that no matter how grim my future looked before, I NOW know that my life will carry on and I can do whatever I want to do, this hairmare will NOT in any way hold me back. I get strength from you and everyone on here. Thanks so much!
Comment by Emily on March 15, 2008 at 10:17am
Thanks for your comments, Isabelle and Anthea and YoKasta. It's great to hear from others who understand! I definitely agree with both of you that it's easy for people to brush off alopecia, because it's not life-threatening - but as I said, I do believe it is life-altering. My parents used to say to me all the time "it's just your hair, thank god..." That used to really bug me, because it's in no way, "just my hair"... I guess we just have to keep on bringing awareness to our condition, and educating others on both the condition itself, AND the experiences of those who live with the condition everyday.
Comment by kastababy on March 14, 2008 at 5:04pm
I think a lot of people people do tend to trivialize alopecia simply because it is NOT some catastrophic disease like cancer -- and then brush off the people who live with it by saying, "well you can cover it up" or suggest that we wear wigs or scarves to cover it up. Our alopecia tends to shape all of us, whether we like it or not. Alopecia makes some of us stronger, and it makes some of us weaker, although we don't like to admit that. I think that your friend made a really insensitive remark, and you have the right to be difficult sometimes. I just had a coworker make a similar statement to me yesterday, and please believe -- I had to check her real quick and put her in her place. Thank goodness you have the resilience and confidence to point out that your alopecia is what makes you who you are!!!

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