Living With Alopecia – It’s Not Just Hair

I was diagnosed with a form of alopecia in early 2016 and it was one of the worse days of my life. In all honesty, for a while I was suspecting I had alopecia or at least sort of knew. Before the diagnosis I even told my best friend that I think I have alopecia but it was a completely different feeling hearing it from the doctor.

For a few years I noticed my hair was falling and growing back. I didn’t pay too much attention to it since the hair would grow back within a couple weeks to months and I mostly assumed it was because of manipulating my hair so much. A year before I was diagnosed, I noticed a balding spot of my scalp and I somehow convinced myself my hair was just thinning. A few months later I noticed the spot was getting bigger and I started to worry but I was still convincing myself I wasn’t actually losing hair.

Then my hairdresser started telling me I should really have my scalp checked out. I also showed my best friend and she agreed I should see a doctor. On my next visit to my dermatologist I showed her my scalp, and she said it could be traction alopecia but I should do a scalp biopsy to be sure. When I got home, the first thing I did was reading everything the internet has on traction alopecia. During the two weeks that I was waiting for the test result, I wasn’t very worried because from what I read on traction alopecia, all I had to do was stop manipulating my hair.

I also started wondering how could I have traction alopecia. I had box braids at the time but I don’t braid my hair often. I didn’t do any hairstyles that pulled my hair either. My hair loss pattern didn’t match traction alopecia either, my edges and forehead were fine, most of the hair loss was happening in the crown area. Then the day of getting the result came. I believe it was on a Monday, I worked from home that morning, then went to the office after the doctor’s appointment.

I met with the doctor to go over the result and she confirmed I have a form of alopecia called Central Centrifugal Cicatricial Alopecia, or CCCA. I had never ever heard of this type of alopecia in my life. Then she tells me this form of alopecia can lead to permanent hair loss because it causes destruction of the hair follicles and scarring. At that moment, I was just staring at her and I didn’t really know how to respond or react I was just listening. She kept speaking, explaining a bunch of things and I just listened as if I was okay, and scheduled the next appointment.

After I got in the car, and I started crying. I cried a lot just sitting in the parking lot then I called my best friend and told her about the test results. I finally started the car and went to work, I was crying throughout the 25 minutes drive. I spent about another 10 minutes in my car before I decided to walk into the office. When I got to my desk I pretended I was okay and just spent the rest of the day like any normal day.

On the outside, I was smiley just like any other day but in the inside, I was dying; I was in so much pain. At one point, I took a 15 minutes bathroom break just cry again and also look up things about CCCA online. And finally, the day ended and I went home. I wasn’t crying much anymore, I was just feeling very sad. All I was focused on was how I may permanently lose all my hair. I kept looking in the mirror imagining that my hair may not be there someday. I felt ugly when I looked in the mirror. Every part about me felt ugly. I knew who I was and what I looked like but that wasn’t how I felt.

Besides losing hair, my scalp was extremely itchy even if I had just washed it, and sometimes I felt a burning feeling on my scalp. The doctor recommended Kenalog injections monthly and I was also put on Doxycycline. For the itchy/burning feeling, I was prescribed a foaming cream whose name I can’t remember. The foaming cream was very expensive so I figured I could save by using Aloe Vera gel.

Kenalog injections are very painful. My scalp was always bleeding afterwards because of the amount of injections. One time I asked the nurse how many injections I received, and she replied 35. And this was in one session. Then came the side effects from Doxycycline. I started getting nonstop yeast and bacterial infections. I was put on a lower dosage of Doxycycline but no change.

I was getting the injections and taking the doxycycline for over a year and I didn’t really see jaw dropping results. The hair was growing back in some areas but at a very slow rate. So now I was spending money at the gynecologist and also at the dermatologist. Eventually I decided to stop the treatments and try to take care of my hair through a more natural approach. I couldn’t take the yeast infections, painful injections anymore; and the medical bills just kept increasing.

I also decided to focus on my emotional health. I had to learn how to accept and love myself again. From time to time, I still have to tell myself I will be okay even if I lose all my hair. I had to tell myself losing my hair will not make me an ugly person. It’s hurts a lot when I tell someone I have alopecia and their response is “it’s just hair”. It’s not just hair, it’s my emotional and physical health. It’s waking up in the morning and feeling depressed. It’s looking in the mirror and crying. If it was just hair I wouldn’t be feeling all this pain.

At one point in time, I was one of those people that thought that it was just hair, until I was diagnose with alopecia. Because of this, I don’t hold a grudge when someone says it’s just hair; I understand sometimes you have to walk in someone’s shoes to truly understand what they’re going through. Besides, I got an opportunity to truly learn how to love and accept who I am, which is not so bad. I’m still coping, and I believe I will eventually be okay whether all my hair grows back or not.

2 comments

  1. Wow, What a powerful post! I am so sorry for the suffering this has caused you. I have had to receive difficult news from a doctor before (regarding one of my kids) and no one knows what that feels like but you. I sat there not wanting to believe it at first… alone with news you don’t want. I do know that you are a brilliant writer, and you have a beautiful heart. Your words will bring others comfort, and you are truly a beautiful woman inside and out. I hope you have a fantastic week, and that only good things come your way.

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