Diagnosis
In 1998, when I was in 4th grade, my mom noticed a small patch of hair loss while she was brushing my hair one morning. She told my dad (a physician) about it, and he decided to take me to a dermatologist. The doctor told my parents that I had alopecia areata, gave me the steroid injections (every 8 year old's nightmare), told me to apply a cream (looking back, I believe it was an irritant) and come back every few weeks.

I don't remember my initial reaction to the diagnosis, because of course I couldn't understand what living with alopecia would entail. I didn't know that I would be battling this for the rest of my life, that I would learn about how powerful hope is, or that I would be so affected by alopecia that it would decide my career choice. All I knew was that those shots were the most painful thing I had ever felt! What most people don't understand is that in order to receive the steroid medication properly, it needs to be placed in between the first and second layers of the skin. The skin on the scalp is not stretchy - probably the least stretchy area of skin on the human body! - and when you try to stretch it by putting a liquid between those layers, well, let's just say it's not very pleasant. I distinctly remember my mom bribing me with candy to coax me into the doctor's office. It probably didn't work.

Middle School
After the first round of steroid shots and irritants, my one bald patch started to fill in. However, I was getting more patches all around my head. In sixth grade I was going completely bald. My hair was so thin that my parents were starting to worry about school. I'm sure most alopecia patients who've gone through the same thing can say that middle school kids aren't the kindest! Combine that with my extremely shy personality and I was left friendless. Thankfully, there was no outright bullying, but I was teased a lot and people mostly just stayed away from me. I continued to excel in school, though, and this was a great outlet for me. Books and math problems didn't care what I looked like! I began wearing a synthetic wig. The problem with having black hair is that it was very difficult to find a realistic-looking wig at the time and in the city where I live. Thankfully, now the Internet has made life easier for people who choose to wear wigs. But for me, I was extremely self-conscious about the wig and I knew that people could tell it wasn't real.

You may be asking why I didn't tell my classmates or teachers about my alopecia. Like I mentioned, I was a very shy kid. I didn't want any attention brought to myself, so I begged my parents not to tell anyone at school. They complied, which is something I now wish they hadn't done. I might have been spared a lot of emotional pain had I been forced to become comfortable with my hair loss. I think that this is the biggest issue with alopecia sufferers today: we should have no shame or discomfort at the thought of being bald. We were born a certain way and society should learn to accept that!

High School
Oh, high school. It's tough enough for people with hair, isn't it? Before I entered 9th grade, I was still wearing a wig. And I hated it. I was put on high-dose prednisone to try and jump-start my hair growth, and it worked. However, I gained a lot of weight due to the steroid side effects, which took a long time to lose (I still blame my belly pudge on that summmer!).

The rest of high school was full of academic challenges, learning who my true friends were, experimenting, and no dating - because I was still extremely self-conscious about myself and found it difficult to trust other people. I hadn't worked up the courage to tell anyone about my alopecia.

College Days
I consider college to be where I really came to terms with alopecia. I found a friend who I felt close enough to that I told her about my "secret" - and she let me down. She told me that she needed time to accept that this is who I am. Can you imagine the sadness I felt? Needless to say, I decided she wouldn't be my friend anymore. It took a few more months, but in my sophomore year I finally figured out who my friends were who I could turn to for support. These girls were there for me when I told them about alopecia, and are there for me now.

I went through the first two years of college without many hair problems. But at the end of my sophomore year, I was losing hair fast. I was also spending the summer at my aunt's house in a different state, doing an internship. I had decided that medicine was the right field for me, and I wanted to be a dermatologist - the first dermatologist with alopecia, who specialized in alopecia! This fueled me. However, people still wanted to bring me down. My parents had informed this aunt about my diagnosis soon after it happened. This didn't stop her (or her kids) from making snide comments to me about hair. If any of you have experienced something like this, how did you handle it? I felt alone. It was a nine-week internship from hell.

After this summer, I went back to college wearing a wig for the second time in my life. This time, it was a natural hair wig, but to the trained eye, it was far from natural! I think the worst part about wearing a wig has to be (1) the summer heat - where I live, it stays above 100 for most of June, July, AND August! and (2) the limited movement you have - I love to work out with my friends, but I wasn't able to do pilates like I used to. The movements always had me nervous that my wig would fall off in the middle of class, and you can imagine that humiliation!

I went back on the steroid injections, even though I hated the side effects, and my hair eventually grew back into a cute pixie style. I finished my senior year, got accepted to medical school, and graduated with honors. I was happy :)

Acceptance
So this brings us to today. I finished my first year of medical school (for those of you who don't know, medical school = doctor. Nursing school = nurse). It was very stressful, but I had told my parents, "If there's a choice between being constantly stressed, having no hair, and being a doctor OR not being stressed, having hair, but not following my dreams, I would choose a bald head any day!"

Over the past year, my hair loss has progressed to cover the entire back of my head, above my ears, and one temple. I also have a few smaller patches on the top of my head.

I made a decision a few months ago, something that I'd been thinking about for a while. My hair length is pretty long right now, halfway down my back. While I'm extremely grateful for this hair, I feel like I have no use of it. It falls out, gets in the way, and I have to constantly adjust it whenever I go out to make sure no patches are shown. I want no treatment. I want to show this disease that it doesn't control my life; I control my life.

I believe I am ready to let the world know that I have alopecia.

  • I want to shave my head, give my remaining hair to Locks of Love, and spread the word to my community about alopecia.
  • I want to be an ambassador to the medical community, representing all alopecia patients.
  • I want to show the world what alopecia is, what it means, and that it doesn't limit anyone.
  • And most importantly, I want to show my fellow alopecia sufferers what acceptance looks and feels like.

I know there are a ton of people who've done this before me, and done it better. If you're one of those people, I applaud you and respect you. It took me 14 years to come to this stage of my life, and believe me, it hasn't been easy. I've had my depressed days when it hurt me to brush my hair because of all the hair that would collect on the floor; my angry days when I wanted to scream about how unfair this was; my jealous days when I saw magazine articles about "Cute Summer Hairstyles!" or "Hairstyles for Your Face Shape!". To anyone going through one of these rough patches, be strong. Strength comes from inside you, and from the people around you. Do you feel like you don't have a support system? Find one. Are you happy with yourself right now? Good, keep doing what you're doing - and help others find their way.

If you've actually read all of this, thank you! I've never written about my alopecia story before, and it feels liberating! If you have any questions, feel free to comment.

It's 3:30 am, so good night :)

Views: 131

Comment by okiegal on July 8, 2013 at 5:05pm

@AiChan:

You're lucky you don't have to shave your legs! I'm "unlucky" in that the only place where I lose hair from is my scalp and eyebrows. Sometimes my arms but it's not noticeable. But I always wonder why it doesn't fall from my armpits and legs!

Acceptance is so hard from what I've experienced. I think once you get there you are set! Of course there will always be those moments when you see long hair, or a cute hairstyle you want to try, etc. and you get sad. But alopecia has shaped all of our lives, and we can choose to allow that to make us better or worse.

Comment by ASRN on July 9, 2013 at 1:25am
Thank you for sharing. I agree that losing the wig is completely liberating! Good luck on your continued journey through med school :-)
Comment by LilyPants on July 12, 2013 at 9:50am

Thank you for sharing your story. My son who is 2 has Alopecia and I have been worrying about what it will be like for him growing up. Do you have any advice for a child who will be entering school?

Comment by okiegal on July 31, 2013 at 10:48pm

@LilyPants
I recommend letting his teachers know what is going on. Education about alopecia is so important because you want him to have support wherever he goes! As he gets older, maybe have him do a show and tell or a presentation on alopecia just to let people know what it is. I think that the earlier people know about a child with alopecia, the better it will be in the long run. That's something I definitely regret that my parents didn't choose for me.

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