My Journey With Alopecia

September is Alopecia Awareness month. People from all walks of life, regardless of age, class, gender, lose patches of their hair; it is an equal-opportunity disease. It can be moderate, or it can be total hair loss. It is autoimmune, where the body attacks its own immune system, causing the hair to thin out and fall. Causes are unknown, but some attribute stress and genetics. There is no cure, only treatments. Those struggling with the disease use September to educate, communicate, and share their journey with the world.

I have alopecia. I never thought I’d participate in an “awareness month”, but here I am. I have lost significant amounts of my hair. As a young woman, this has been heartbreaking, frightening, confusing…one second I’m appreciative that its only hair loss and the next I am crying my eyes out.

This is not the first time I’ve lost my hair. At 8 years old, I suffered a month-long, undiagnosed illness that made me shed layers and layers of my skin, along with my hair. I had an extremely high fever and was unable to walk for most of the time. I was pricked with needles from local clinics to UCLA Medical Center, but no doctor had neither a diagnosis or a cure. After drinking abeh Zam Zam, holy water, I was finally healthy again. But the illness took my hair with it, and so my long, dirty-blonde locks were cut into a sharp bob. My hair never went back to it’s full health again.

For much of college, I wore extensions. Then finally three years ago, I was confident enough to take my weave off. Upon removal, I was shocked to see my hair past my chest, almost reaching the end of my back – it had grown significantly. I finally had my hair back. I loved being able to swim without having my tracks show, I loved running my fingers through my hair and knowing it was all me.

I enjoyed my hair until this year, when it significantly thinned out. And now, its falling out again.

This disease ruins your self-esteem. I constantly check mirrors to make sure my patches don’t show. I’ve contemplated shaving it all off and getting wigs. I’m still able to cover the spots, but I don’t know how long this will last – I hope it does. But with every new spot, I feel exposed, I feel small. Being a woman, being in Los Angeles, being around my extremely beautiful friends who all have incredible hair, I feel inadequate.

But it’s just hair. I cannot and will not let it define me, or shake me so much to my core that I can’t go on. The “great” thing about being from one of the poorest nations on earth is having parents who constantly remind you how lucky you are; pity doesn’t come around easily in Afghan households. Don’t get me wrong, the support is there, but it is always accompanied with, “it could be worse”.

And that’s the truth. It could be worse. For the time being, I can cover my spots. And maybe one day, I won’t be able to. And I hope that on that day, I am strong enough to realize that I am not my hair, but that I am a child of God, an unconditional friend, with an unquestioning heart, and an indiscriminate embrace.

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9 Comments

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9 Responses to My Journey With Alopecia

  1. Zohra

    Hi Madinah,

    Reading this post was so inspirational for me. It made me feel like there’s someone out there that understands what I go through every day. My alopecia started when I was 15 years old and I always thought it was unfair to have to go through something like this at such a young age. I felt like no one could really understand the pain I was going through. Reading your journey made me remember that I’m not alone. I have days exactly like yours where I try to tell myself it’s just hair, and having been going through it for the past 6 years I would’ve thought I’d be used to it by now but there are days where I wake up crying and thinking I can’t leave the house because I feel so insecure. I’ve always tried to cover my patches and hide with extensions but recently my hair thinning started getting worse at the scalp and I’m at a loss of what to do. I’m trying so hard to be okay with it and not let it control my life but it’s just so hard. Thank you for the lovely post, for educating people and for letting others know they’re not alone.

    • Madinah

      I am 100% with you sis! We can do it. I feel exactly how you do, you’re not alone! Inshallah there’s a cure soon but until then alhamdullilah for everything else that we are abundant in. Sending you sooooo much love and kisses!

    • Sofi

      This is the first time I am hearing of another Afghan going through something similar as myself. My hair started thinning out, especially around the crown and the center of the hairline when I was in high school. It only got worse from there. I used to suffer from depression because I felt that I wasn’t a tall, thin, beautiful Afghan girl with luscious thick hair. I went to places that offered treatment but they said it wasn’t guaranteed. Who wants to pay thousands for something that might not work? Being young and having thin hair makes you jealous of the older women with super thick hair. I actually did end up shaving it all off and letting it grow fresh in college. (I covered it though.) it grew back just a little healthier but not enough. Finally, throughout the years, I’ve come to terms with my hair and have learned to feel beautiful with it. It may not be a lot but it’s what I have and it isn’t the end of the world. One’s hair isn’t the only thing that makes a woman beautiful. I still get worked up about my hair once in a while but now that I have a daughter, I don’t ever want her to see me insecure and without confidence. Therefore I am always trying to feel good about myself so that she learns and grows to be secure and confident with everything she has. 🙂 Thank you for your post. Made me feel good in this world of high standards that we live in. <3

      • Madinah

        Hi love! I am happy to see you’re trying as best you can. My hair is shedding even more and I may have to shave it all off soon. Its completely okay for us to feel bad once in a while! It’s hard, esp. bc we’re women, AND women who come from a nation that has amazing hair! So its difficult to see our Afghan sisters who have amazing hair and we don’t. But that has absolutely zero to do with your spirit and heart. I’m happy your daughter has YOU! Thank you for your comment and I’m sending you love!

  2. gharib

    time for Hijab?

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