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  • Tara Perverseff

My Alopecia Hair Loss Story: Getting to a Place of Resilience

If you were to have asked me before my hair fell out: What would you do if you lost all of your hair in the span of a month? I answer would probably have been die. Or freak out. Or freak out then die. Well, you won't die, but you might freak out a little bit, or a LOT. I asked that question at the beginning of my Facebook live earlier this week. I realize, though, that you don't have to lose all of your hair to freak out. Certainly, watching that pony tail get smaller and smaller may likely also cause a certain level of panic.

I had the best hair; strangers would come up to me on the street and tell me they loved my hair. When I was younger, of course I "hated" it and wanted something different. In high school, I'd never go to school without my hair done, and over my lifetime, I spent a lot of time doing my hair. As I got into my 30s, I realized that it was really unique. I guess in part, it defined me. So, what happens when that defining factor is taken away?

In my case, I went from utter devastation to resilience. It didn't happen overnight, and it took me a long time to tell my story, but I have learned, as Maya Angelou says: "I can be changed by what happened, but I refuse to be reduced by it".

There are many different kids of hair loss. Mine just happens to be the most severe form there is. I have alopecia universalis which means I have no hair. Yes, none. What first started out a small spot turned into total hair loss. I might have actually freaked out the most when I started losing my lashes.

The first time, I lost just the hair on my head, and then it grew back. I had taken so many different types of medications to keep it growing and stop it from falling out, but in the end, the hair I had regrown after the first fall out started to fall out again. Now, I take nothing for it and I am not searching for a medication that might bring it back.

When your hair is falling out, you are obsessed with 2 questions:

  1. Why is this happening to me?

  2. What can I do to stop it?

If you have hair loss, you may, or may not, know the concrete answers to these questions. Most likely, you don't. After a decade long journey of hair loss, I am only now beginning to understand some of the "why". For me, a lot of it is connected to gut health, and I talk a lot with my health coaching clients about the importance of gut health. To me, it's a common root cause of disease in autoimmune conditions. My hair loss is autoimmune related. Understanding parts of the why, however, does not mean that I will be able to grow my hair back. I have shifted my perspective from "why is this happening to me" to "what is this here to teach me" and "what can I do with this"? My social media theme of the week this week was to tell my story and lend my voice to the collective community of women who have experienced hair loss. We are everywhere, even if you can't see us.

When my hair first fell out, I didn't know any other woman who had alopecia. Knowing what I know now, I am sure I did, but either women didn't talk about it, or I didn't recognize that someone was wearing a wig or had strategically covered up their bald spot with the hair the had left. I certainly became an expert at that.

I have told the story about my "get up off the floor moment", but didn't realize that's what it was at the time. If you have had hair loss, you know that having a shower and then having to comb your hair can be... traumatic. That's when you have a lot of loss. When it was falling out the first time, I remember getting out of the shower one day and running my hands through my hair and out came chunks of hair. Not a little, but actual chunks. It's so interesting how you don't even feel it coming out.

If it were a sound, hair loss would be quiet and listless. Almost like a feather.

At that moment, I just laid down curled up in a ball on the ground on my bath mat. I was soaking wet and freezing cold. I could smell the shampoo and conditioner and I was sobbing. I wanted someone to come save me, hug me, but of course, no one could. After a few minutes, I decided to just get up, and so I did: I got up off the floor and said I would never go down onto the floor again. Looking back on that moment, I've often asked myself if I was in a state of denial and just trying to suppress the emotions associated with that loss. I've decided that that's not the case.

Instead, I look at it as the start of my resilience journey. The choice I was making to continually be devastated about my hair loss was only going to keep me locked into a painful and broken cycle. There is no fast track to transformation. You have to work on it every single day. I had to work on the thoughts I told myself because, as I started to understand, the body listens to your thoughts. As a Health Coach, I know this now, but certainly didn't when I was down on the floor.

I could talk about wigs and lashes and makeup, but I don't. Not really. Instead I focus my time on talking about lifestyle changes and how we can work to reduce inflammation in the body. I believe that food is medicine, movement is medicine, sleep is medicine, stress management and meditation are medicine, and healthy social relationships are medicine, too. I talk about mindset and how you must change your mind to empower yourself. These are the things that are important to me.

To hear more about my journey, I invite you to watch my video here. Sometimes it's easier to talk than type. That said, this is the first time I have written about my alopecia. And guess, what? I didn't die.


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