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 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!!!
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 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 im2sexyformyhair (A.K.A. Tina) on March 15, 2008 at 11:16pm
I read your post and had a very similiar situation with a best friend of mine years ago at the gym.. it also affected me and obviousely still does huh? I remember the uncomfortableness(if thats a word.. ha ha) of having to work out with my wig and she said you have a choice to come to the gym without it, thats your issue.. something on those lines and I didnt know what to say.... people really see myself as being very confident(even my husband) hence, what they do not understand is I do not like people feeling sorry for me or to feel uncomfortable.. So what I guess I am saying to you is this.. I have come to realize that people say things and really dont understand/nor mean to hurt us...they really just dont know...not that we want anyone else to exp. this condition, but unless they were in our shoes they can not see the facts of it... it is hard but know your friend sees you probably a confident person and try not to take it to heart.. well I dont know your friend either and I was not there, so please do not take me the wrong way either.. take care, Tina
Comment by Miranda on March 16, 2008 at 12:15am
I wonder if maybe she just overlooks the fact that you have alopecia because she is a good friend to you? Maybe she is immune to it, although you may not be, because she accepts the way you look, and she understands and admires you as a person? Just a thought.
Comment by Emily on March 16, 2008 at 10:38am
Miranda, I definitely think that's a huge part of it - so I should be thankful that I have a great friend who sees me as something more than my alopecia! I just thought it was interesting to note that by having such good friends who don't notice my alopecia, sometimes my experiences go unnoticed as well...
Comment by kastababy on March 17, 2008 at 8:47pm
I have learned over the years that my true friends do love me for who I am, and NOT what I look like. One of my best friends made a comment about one of my pictures on my MySpace page, and he made it a point to point out that he has known me for so long now that bald and beautiful is how he prefers me to be -- he made the observation that when I was just me -- no hair, a scarf and my jeans and a shirt that I appeared to be at my happiest. My friends have all been guilty of making an insensitive comment on occasion, but usually they recognize when they have gone too far and make sure to reinforce that no offense was intended. Have a great day!!!
Comment by Cheryl, Co-founder on March 18, 2008 at 3:55pm
Emily, I find the same thing sometimes.

My mom came to her first Alopecia conference with me 3 years ago and after hearing stories from others, she came to me in an emotional voice and told me that she had no idea that I had suffered that much. I lost my hair at 26 and was not living at home at the time. So most of my struggle my family did not see.

But, it is not the first time that people have assumed that I have had a pretty even, "lucky" and uneventful life. I think they see us handling our alopecia in such a way that they can't imagine that it was ever a problem for us. It is interesting on one hand we don't want people to treat or see us differently but on another we do want others to acknowledge that we have struggled. Then I take it one step further and wonder if it is me that has hidden that vulnerable part of me when talking about my alopecia to others.
Comment by Ingmar on March 18, 2008 at 4:17pm
Hi Emily,
I also think your friend sees you a as a great and strong person and probably admires you for the way you deal with the alopecia. But does she really know how it's like for you? Have you told her about the pain you experienced the past 25 years? The tears you've cried? Because if she doesn't know your deepest feelings I don't think she would have said the things she did... ( at least I hope so) Cause if she does know how it's been foor you I would be really dissapointed in her!
bye bye. ingmar
Comment by Emily on March 20, 2008 at 5:56pm
Wow. So many of you really got the point exactly. I think I do pride myself on being strong and confident, and so don't often reveal all of the hard times, and all the times I've cried because I was just so fed up with being different. Of course my friends and even family members have no idea the extent of how I feel alopecia has affected me. I can be very closed off, trying my absolute best to put on a brave face. Yet at the same time I expect people to just know how hard things can be. I do need to share more - and realize that this in itself is a strength.

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