And then there was none… hair that is. One year later…

Sometimes I don’t’ know how to react, or what to say, when others try to console me because they think I’m dealing with cancer. They cheer for me in my races, and they tell me I’m beautiful, and they tell me I remind them of their battle. I usually just smile and say thank you. Only when someone directly asks me about my cancer do I correct them and tell them that I have Alopecia. Most of them don’t know what that is, and most of the time I don’t feel like explaining it to them because of how inappropriate I think they were in asking me about cancer. Even if I did have cancer, I don’t think it’s appropriate to ask a perfect stranger about how they are dealing with it. I’m sure dealing with cancer is hard enough without having to explain it to strangers.

But I don’t have cancer. I have Alopecia Universalis. People ask me all the time about what treatment I’m doing for it. I’m not. I’ve tried all the treatments I’m willing to try at this time. I don’t want to take expensive drugs that cause more problems than what I already have. And what I already have is No Hair. Otherwise, I am perfectly healthy. Since I started losing my hair, I have done multiple 5K races, 10K races, a half marathon, and just completed my second triathlon. And all without hair.

Don’t get me wrong, I love my wigs, and they make me feel and look more like my “normal” self. It took me a while to get comfortable not wearing hair, but over the past year, it has pretty much become the norm for me. I wear hair to work, because I don’t want to take away from my patient’s experiences, and their time is precious. Their visit to my clinic is not about me, it is about them. I still remember the first time I went out to dinner without my hair or a hat. I had done it pretty much out of spite because my boyfriend had just told me that I HAD to wear my hair to one of his colleague’s weddings. I told him that he did not get to make that decision for me and what would he do if I decided to never wear hair again. I was heartbroken at his response: “Is that really an option? I don’t know”. Well, in my opinion, that was the most wrong answer he ever could have given. So the next time we went out, I didn’t wear hair. I was so uncomfortable and constantly looking around to see if people were staring or whispering. Surprisingly, they weren’t.

I have found that having Alopecia is a DAILY struggle- with myself. I see old pictures of me with hair. I remember fixing my hair. I hear others talking about hair. And all of this makes me very insecure about not having hair. But then there are other times, I have forgotten that I don’t have hair. There is nothing that I cannot do because I don’t have hair. Every day that I go out in public without hair, my confidence is building. Yes there are those people that stare, children that loudly yell to their parents, “that girl doesn’t have hair”, or those that approach me with their cancer stories, and it hurts my feelings, but then I just keep walking and going about my business. I don’t let it bring me down. When I first started losing my hair, a very good friend of mine kept telling me, “Jennifer, You just have to OWN it.” I really didn’t understand what that meant until recently. I just walk ahead, head held high, a smile on my face, and know that Alopecia is NOT going to bring me down.

I may not have hair, but I am still ME. Those that know me and love me, do not care about my hair. Those that don’t know, well, frankly, they don’t care about my hair either. Yes, I wish all my hair would grow back, because that was part of my identity. But I think at this point I would also be a little sad if it did come back, because I now have a new identity- and I think it’s better than the one I had before!

Views: 273

Comment by Kathy on September 16, 2014 at 8:49pm

It has been just about a year for me also.  Still not doing well some days and then other days not too bad.  I would think I would be over the bad days by now.

Comment by michelle on September 16, 2014 at 10:16pm

Thank you for sharing your story!!!  I also have AU..its been 3 years.  I go 'au natural' and like you I hold my head high.  There is no question that I live my life.  There is also no question that if my hair grew back I'd welcome it with open arms. Its like an old friend thats been gone way too long ;-)

Comment by GardenJess on September 16, 2014 at 11:07pm

Thank you for such a beautifully written testimony to the limits of hair. I can't help but wonder how it all worked out with the boyfriend. My husband worries about what people will think if they see me without hair, but as you say, either people know me and don't care (except perhaps to be glad it isn't them!) or they don't know me and don't really care either. My hair or lack thereof is just not that interesting or sad in the grand scheme of things.

I appreciate your thoughtful approach to wig wearing. Even as I don't want to feel I have to wear a wig, I am still sorting out when wearing a wig make sense. I just told my kids this morning that I was wearing a wig (to help out in an elementary classroom) to look more normal. It's not that I want to hide my hair loss or that I feel like a freak without hair, but at times I choose to have my alopecia not even on the stage.

Comment by Jennifer on September 17, 2014 at 9:30pm

Things with the boyfriend are Ok, and really JUST ok- not as awesome as I wish they were.  And obviously I was never going to go bald to a wedding where I knew no one, and had only met the bride one time. I would not want to take attention away from her, I was just very upset at the principle that he thought he could dictate how and when I would wear hair.  I feel like, if I'm comfortable without it, he should be too!  I try to be positive about it everyday and not let it get me down, but I do still struggle with it almost daily.  I just refuse to let it run my life- (I guess that is the control freak in me!! :) ).  thanks everyone for letting me share my experience and vent.  I'm so happy others are handling this very well also (each in their own way), and I pray that those who have not yet come to terms with alopecia, will.

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