My Alopecia Journey

Opal Rising Magazine FEATURE STORY

KRISTEN VACCHER

Throughout my experience with hair loss, I have learned a lot about myself and life, like confidence, strength, and the ability to keep going no matter what.

My story begins 19 years ago when I lost my hair. I remember the first time I noticed the shedding
I was taking a bath and after soaking for a bit I sat up and all around me there was hair it was a gut wrenching feeling to see all this hair floating around you knowing something is very wrong.

If you haven’t already; go check out the podcast between myself and the beautiful Candice Smiley we talk about so many important topics and that is what I would like to continue to do today with writing an article for create the ripple magazine. https://www.youtube.com/watch?v=JFXREIK8DXk

My story begins 19 years ago when I lost my hair. I remember the first time I noticed the shedding I was taking a bath and after soaking for a bit I sat up and all around me there was hair it was a gut wrenching feeling to see all this hair floating around you knowing something is very wrong. The next couple of weeks and months were just a blur, full of going to the doctors, switching to a silk pillowcase, getting referred to a specialist, sitting in classrooms and then at the end of the class picking up all of the hair around me, having to get special permission to wear a bandana in school, and other kids whispering and looking at me with pity.

It’s hard to deal with something when you don’t know of anyone else who has this issue or who you can talk to about it, as eventually my teenage friends wanted me to get over it. I wondered how to find options to help me and what my future would look like if I kept losing my hair. I hoped and hoped that my hair would come back. People around me didn’t know what to say to me, other than “everything will be ok,” and “I am sure it will grow back someday.” I was left asking myself, “What if it doesn’t?”

I was eventually setup with a dermatologist and during this appointment, the specialist asked where I had hair and where I didn’t have hair. At that time, the hair loss was just on my head. The specialist described the different types of hair loss: 1. “Alopecia Areata,” which meant losing some of the hair on your head in patches; 2. “Alopecia Totalis,” which was complete hair loss on your head; and 3. “Alopecia Universalis,” which meant no hair anywhere on your body and this included eyebrows, eye lashes, arm hair, leg hair, armpit hair and nose hair.  Throughout my life, I have experienced all three types of hair loss described above. I now have an undefined type of Alopecia (I like to call it Alopecia Weirdalis), as I don’t fully fit into any of the 3 types – I have 80% hair loss on my head, no arm or leg hair, but some eyebrows and eyelashes and, oh yes, that pesky armpit hair. To this day, I cannot tell you why I started losing my hair and continue to experience hair loss.

The dermatologist told me that we could start a regime that would grow my hair back. Of course I got my hopes up thinking, “Yes, ok there is a solution!” I tried her suggested medications (prednisone pills, steroid shots and Rogaine cream), but it didn’t end up working due to unhealthy side effects.

Next, I investigated different treatment options, like laser therapy, special shampoos, naturopathy, and even contemplated another specialist’s idea to actually cultivate eczema onto my head. Finally, after years of trying almost everything and feeling like a guinea pig, I decided I am done trying to get my hair back, as I would get a little bit of hope and then BAM it would fall out again! I couldn’t take the rollercoaster of emotions. The constant battle to cure an uncurable disease is not one that I wanted to face any longer.

I retreated inside of myself never wanting to talk about my hair loss with anyone. If someone from my family would ask about it, I would give a short answer and change the subject. New friends didn’t know because I hid it so well always thinking about a plan or an excuse if I was asked to do any activity that wasn’t wig friendly. I found one wig site that worked for me and I always ordered from them and didn’t even look at any other wigs that may be out there because even though I had given up treatments I still didn’t want to admit I was never going to get my hair back.

Some people have said to me, “it’s just hair” and “at least it isn’t cancer.” While these things are true, the people saying these things don’t necessarily realize how much something like not having hair can make you feel so alone and how hard it is to navigate a path forward in a world that is all about appearances. You have lost a piece of yourself, a piece of you that everyone else you see has and it’s not fair but then again life isn’t fair is it.

It has taken me so long to feel ok with not having hair and accepting that my hair may never grow back…

Throughout my experience with hair loss, I have learned a lot about myself and life, like confidence, strength, and the ability to keep going no matter what. My focus now is to help other people who may be losing their hair, because I wish someone, who had a similar experience like mine, would have been there for me and told me it’s going to be okay and that having hair doesn’t define me. I define me.

Three years ago I had my wig pulled off by a little kid in front of a group of my friends who didn’t know I wore a wig. This reignited something in me. This incident spurred me to research different wigs that would stay on my head; ones that I could have a high ponytail in and could style, not just wear it as it came. I stumbled upon a prosthetic wig, which actually suctions to your head. I was like, “Wow. This is amazing. Let’s give it a go.” The only stipulation with this wig is that you have to have a completely bald head in order to wear it properly. I have hair loss but not to the point of having a totally bald head. Before going to the appointment, I had to shave my remaining straggles of hair off.  This was hard for me, this was a step I knew I needed to take but to shave my only hair off of the top of my head was very emotional.

Shaving my head was worth it to wear this wig and feel like a whole new person. I can pull on it, and it doesn’t budge. I can finally put my hair up in a high ponytail and not have it look like I am wearing a wig. I jumped off the stratosphere in Las Vegas and didn’t have to hold on to my hair.

This wig made me really feel alive. I don’t know exactly how to describe it, but it was like I could finally do whatever I wanted and wasn’t held back by my hair loss. It is such a freeing and wonderful experience, but it really makes me wish that I wouldn’t have allowed myself to be held back by my hair loss all along.  For all of you that did watch the podcast this was the wig I wanted to circle back to and ran out of time.

I’m sharing a little piece of my story so that anyone out there who is experiencing hair loss and reads this article will know that they are not alone. In varying degrees, we all struggle. So, it is about finding the positives in life and loving yourself.

For example, there are pros to having no hair…

  • I can be ready in way less time in the morning, because I can style my hair and put it on a stand and the style stays for days.
  • I can easily change my hair style whenever I want.
  • I never have to shave my legs.
  • Honestly, in life without hair, I have been able to truly experience relationships on a deep level for the people that I let close to me.

My family was there for me throughout all of it and continue to be today, they are always rooting for me no matter what. A special shout out to my mom who is super strong and through her encouragement and brave face pushed me to be the confident person I am today.

I have a truly amazing husband who has been with me for 16 years cheering me on, supporting me in everything I want to do and letting me be me. I am one of the lucky ones to have found my person very early on.

I have also developed greater inner strength and confidence.

There is no one way to get through to the other side and it took me years of shame and hiding but I finally got here, and I am stronger for it. You must find the way that works for you. For me, it was the people I surrounded myself with, trying to learn something from each bad experience, and learning to laugh through the pain.

For more information on me you can follow me on Instagram @alo.peaches or check out my new podcast called Those Bald Chicks where we are just 3 girls talking about our daily lives with Alopecia!

Love to All,

Kristen Vaccher

@alo.peaches and @thosebaldchicks

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