My experience with regrowth and acceptance

Hey everyone,

My name is Jennifer and I have had Alopecia Areata since age 11 (smack dab in the middle of fifth grade).

I am 23 now and have recently experienced surprising regrowth of 90 percent of my hair. To give you the full history, I had been shaving the fifty percent regrowth I had developed gradually so that I could wear a suctioned wig by "Fuller Hair". To be completely honest, I continued to shave it even as I noticed improvements because I liked feeling in control.

Alopecia is such an overpowering disease. I remember my first dermatology appointment when my (extremely unsympathetic dermatologist) told me I would "be bald in a week...maybe two." From then on I felt like my hands were tied behind my back. Creams, Steroids, Rogaine..everything that represented false hope and what I felt would be an inevitably depressing future.

In time (and let me stress - it does take time) I accepted who I was, and felt like every time I shaved my head I was remaining in control, that the illness did not control ME.

In February I was at the dermatologist for a completely unrelated visit when they asked me for my complete dermatological history. What was I going to do lie? Admittedly, I do lie occasionally because I never feel like explaining it to people..

So there I was, bringing up my condition to a doctor for the first time in ten years. After being examined by multiple physicians (don't you hate how they always bring in extra med students!?!) they said that with the amount of regrowth I had presented naturally, it would be worth trying cortisone injections.

I didn't respond right away - did I want to go through with this again?

They were surprised at my reaction (what did they expect me to start jumping up and down or something?) And wondered why I was hesitant.

I decided to move forward, all the while feeling like I was in a dream. A dream that I had always wanted and couldn't possibly be happening in my reality. My brain was so flooded with adrenaline and I didn't even feel the needles pinching my skull.

It is now May and I am continuing to have the treatments done. Unfortunately the adrenaline has warn off because as many of you readers know - they sting like a ****.

Deep down I worry about having a relapse.

How frustrating would it be if I work this hard to grow out my hair and one day it just falls out again?

I do feel like I am giving up control. Sometimes I just stare at my 2 inches of hair in the mirror and run my fingers through them. I still obsess over the bald spots and wonder why those annoying circles won't just give in already.

I fee like it's different this time. I'm no longer a little girl afraid of how this will impact my life. I've lived it. I know that I'm ready to move forward with this journey even if I am blind at what the future might hold.

I will keep you all posted on how treatments progress. I feel better having wrote this. My boyfriend is supportive in the only way he can be (the, I care about you but don't understand where you're coming from) kind of way. I came down the stares after my second treatment without my wig and said..."Well hey, at least I kinda look like Peter Pan!"

The important thing is that we all need to remain strong and know that we're not alone and that alopecia alone does not define who we are.

I'd love to learn more about you all :)

Views: 42

Comment by Gabriela Gonzalez on May 29, 2011 at 9:01pm
HI, You have such an optimistic outlook! That is something I really admire and wish that I could have. You said it took years for you to accept it, I am still waiting for that to happen, and until then I hardly use mirrors anymore. But Congrats to you for being strong.I wish you the best! Cheers, Gaby
Comment by Jennifer on May 29, 2011 at 9:16pm
The funny thing is in every other aspect of my life I am one of the most pessimistic people you will ever meet. It really is just about realizing it's something you have to manage, just like diabetes or other illnesses. I couldn't look in the mirror for awhile either, and truthfully my mother drove me 3 hours to a wig shop and I ran back to the car and cried the whole way home before I even considered that as an option. Point being it's not an overnight process. I avoided children for awhile too because they can always tell (I think it's because they spend so much time playing with dolls). And don't get me wrong. I'm not mentally cured or anything, not by a long shot. My boyfriend has seen me without my wig twice and each time I made him promise it wouldn't impact how he felt/thought about me. You will get there, I can promise you that. And please don't hesitate to shoot me a message if you need advice/inspiration/comic relief in the meantime.
Comment by Jennifer on May 30, 2011 at 12:55am
Thanks Paul, it's actually great to talk about it. I was first diagnosed in Ridgeland, Mississippi and am convinced that I was the first and only victim that office ever laid eyes on. I pretty much took the "don't talk about it and it will go away" approach for a long time. I refused to join support groups or discuss it with friends. Two summers ago I went to a children's alopecia conference here in Philadelphia and it was really eye opening for me. Seeing all these kids first being diagnosed and treated made me realize my perspective could really help people (in particular the parents). Anyway, during my regrowth "journey" I thought I could offer some insight and have an outlet for discussion so I hope to blog pretty regularly.

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