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 ;).

Views: 7

Comment by amanda~ on July 20, 2008 at 8:25pm
Hi Emily,
Can I just say that although I'm obviously a few months late on this blog...I totally understand what you're saying. I think we walk a fine line of courage and hope and fear and uncertainty at hte same time. It bothers me when people assume that I have not had any major loss in my life because the view me as a "well adjusted" woman. It's both a positive and a negative at the same time almost.

The worst part is that I would imagine the person you're mentioning doesn't even realize how their words stung you to the core. Not to say that this person is a bad person, but that we all need a little acknowldgement for the struggles we have dealt with and things we have overcome in our lives.

Thank you for sharing yout story. I really appreciate hearing that others have similar frustrations as I do and that I am not alone.

Keep on doing what you're doing. Love & grow each day...that's the bes we can all do.
amanda~
Comment by Galvin on April 23, 2009 at 12:01pm
Should of told your friend..."this is an (A) (B) conversation and she can (C) her way out. :)
Comment by Barbara Steinberg on May 2, 2009 at 9:32pm
Hi Emily --
I agree with what Ingmar has said above. Maybe your friend's insensitivity to the challenges you have obviously faced in living with AU are really a reflection of just how strong you seem to her. What I mean is, when we appear beat up and trampled over by the difficulties in our lives, people are quick to recognize how hard it has been for us. When they make a remark like, "you've never had to deal with any major difficulties in your life" it might suggest that they have virtually "forgotten" your alopecia and how tough life has been -- and still can be -- for you. Perhaps you radiate such strength, such self-confidence that your friend has failed to recognize that it wasn't always that way.

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