[Personal Share] My Hair Journey

Be kind, for everyone you meet is fighting a battle you know nothing about. -Wendy Mass

This quote has always been significant to me. People are mean at times. I’m not even sure it’s intentional. It’s just easier to recognize the moment and not the person.

Everyone has a battle they are waging. If not a battle of their own, it’s one they are fighting for their child, their parents, something. Things that are hard to share in real life. Even harder to share with social media—comprised of family, close friends, acquaintances, strangers, even some friends they have never met in person but love dearly. The unknown of how you and your news will be received is scary.

So here I go with my news. My battle. My truth. One of them, at least.

I have Alopecia Areata. It is an autoimmune disorder I was diagnosed with when I was 5.  When triggered, alopecia causes the immune system to attack and destroy hair follicles. My immune system is essentially going haywire and attacking itself. Triggers vary from person to person and are nearly impossible to pinpoint. There is no true cure for this disorder. (National Alopecia Areata Foundation Definition)

I was diagnosed in the 80s, before the Internet. My mom had to write letters to specialists for information because even my doctor didn’t know much about alopecia. At age 5, I had three spots on my scalp that were easily hidden when my hair was in pigtails. Pigtails. Cute, right?  The stress of my parents’ divorce was likely the trigger at the time. My mom found treatment for me. My hair grew back.

Fast forward 25 years. Some of you know that my pregnancy with my son was very traumatic. I was hospitalized for 3 months during my pregnancy. My hair was OK when nothing else really was. Kamran was a late-term preemie, which was better than what we were initially facing for sure, but still stressful. His first 2 years were full of frequent trips to doctors and specialists. Reentering real life, complete with baby, was a very big adjustment. I was working full-time in a corporate environment, which was a stressful place on top of my stressful life as mom.

When Kamran was 20 months old, he weaned from breastfeeding. That’s when I found it: my first bald spot. We were eating lunch at the grocery store before going shopping one weekend. My head itched; I scratched it. There was no hair. The spot was so small, just the size of my fingertip. I would be the only person to ever know it was there, but I knew there was more to come. I knew this was just the beginning. I don’t know why I knew but it was just one of those things where you just know. I was so distraught. I couldn’t finish eating, couldn’t complete the task of grocery shopping. It was vain but, man, it hurt.

I went to the doctor for a blood test, the dermatologist for some cream, and decided eventually that cortisone injections were the fastest route for treatment. The blood tests told me nothing significant. The injections, every 6 weeks, didn’t do much for hair loss but did put some significant dents in my head. I hated all of it. I kept it up for just over a year but worried about long-term side effects and stopped. Time passed, I plugged along, shedding hair the whole time. I got pregnant and lost more and more hair. I tried other things in between. Acupuncture, chiropractics, specialists—I tried everything I could think of. Postpartum has been very unkind to my hair. I even cut out as much negativity and stress as I could. I quit my 9–5 and started my photography business. I surrounded myself with more joy—more of the stuff that mattered to me. More of my husband and son, and now my daughter. Together, my husband and I simplified things.

This past year, I’ve seen so many specialists. I do feel like acupuncture helps to some degree. Not with regrowth, but it keeps the shedding a bay. I’m anemic, so that’s a trigger. I take iron. I’m not sure it helps. I was recently diagnosed with hypothyroidism and decided to take thyroid medication. Not enough time has passed to say if that will help my hair grow back. I’ll keep trying what I can. I do still have some hair. I’ve lost about 50% of my biological hair in large, concentrated patches. I am limited to how I can style my hair these days and rely on hats and very thick headbands. That will only work for so long. I lose hair every single day. Those accessories worked well for winter but now spring is here and I have to adjust. I’m sick of hiding. Of covering up. If you know me well, then you likely know one thing for sure: I am real. I know that life isn’t always kind, or fair. I don’t sugar coat that. I want to just be.

I’ve recently made the decision that it is time to own this. To be me in whatever season of life I am in. To take control of this disorder which I have no control over.  I get to own this.

Alopecia Headshot Jamie Romaezi Second Ave
Photo by Blaire Ring of Second Ave Photography.

 

The way I style my hair shows part of one of my larger patches of hair loss. This adjustment may be hard on me at first. I promise you, though, I am ready. I’ve been ready. I have been waiting for the right time—but no time is ever perfect. So it’s now.

I hope you can help me embrace my new look. Please be kind. I know my hair is no longer within the limits of “normal” (a word I truly dislike). As I work so hard to teach my children, “What makes a person different also makes them special.”  I expect some of you will have questions. Please ask. Please don’t stare. That only makes me feel like a circus act. I’m an open person and am happy to share what I know.

Here is my hair. I hope you like it. I’m not sure how I plan to live this. I may rock it in public. I may limit it to home. You can see where I have hair follicles and where I do not. I also have a wig. It’s an accessory for me just as earrings, necklaces, hats or ties may be for you. I may wear it when I want to feel pretty or feel I need to blend in. That may be daily, it may not be ever. I don’t know what to expect of myself for this leg of the journey.

My only request from you in this is kindness. Not just for me, for everyone, because I assure you I am not alone in this battle.

I am rare. I am unique. I am not alone.

To my friends who have been there for me through all of this so far, thank you for letting me lean on you in confidence.  I don’t know who I would talk to, how I would get my hair cut, this blog edited, or headshots done without all of you.  Most of all, thanks to my husband for being such a huge rock