Living with Alopecia Universalis

My life changed drastically the day that I felt a patch of skin as I ran my fingers through my hair. It was a quarter-sized bald patch. I got a pit in my stomach as I knew that my sister’s alopecia Universalis had started this way just eight years earlier. Mentally, I had a plan for what I would do if hair loss ever happened to me. I knew I was going to throw all the medical cures at it I could, but in the end, autoimmune hair loss isn’t the easiest thing to cure.

I started with the cortisone injections and moved on to the oral steroids. They worked, but they weren’t sustainable. I had to stop taking them in order to have my blood tested accurately for thyroid hormones. As soon as I stopped the steroids, my hair fell out. I made the decision to treat it holistically and just wear a wig.

So now, I have tried half a dozen diets, a few different exercise programs, acupuncture, and biofeedback. My health feels better than most people my age. I never get sick and I have plenty of energy. But I still don’t have hair.

What’s it like to be a bald woman?

It isn’t always fun to be bald. In fact, it almost never is fun. But I try to look on the bright side. I never have a bad hair day with my fake wigs. I haven’t had to shave my legs in twelve years. I can change up my hair color and length based on my mood.

I’m no longer clogging the bathtub drain with my hair. I have saved a ton of money on shampoo and conditioner. (I do wash my wigs, but not nearly as often as I had been washing my hair.)

The cons of being bald

I’m always a little concerned that my hair will fall off and I’ll be embarrassed on a date. The elastic on my wig rubs my neck and starts to hurt after a while. I don’t like to draw attention to my hair and have people comment on my new “cut,” so I try to remember which wig that I wore and where I wore it. That can be difficult at times.

I actually don’t like wearing my wig after a few hours, so I have a bunch of cotton hats that keep my head warm. My favorite type of hats are the Headcovers three seam caps. They fit snugly and keep my head warm.

Losing My Eyebrows

I absolutely hated losing my eyebrows. I had another friend with Alopecia Universalis who told me about eyebrow tattoos. I decided to do those. I intended on tattooing eyeliner on, but after I had the eyebrow tattoos done, I decided I could apply my own eyeliner. It was too painful.

I’m not much of a make-up girl, but every day I apply two lines of eyebrow pencil to my face. I take a black eyeliner pencil and outline my eyes so people won’t notice that I don’t have eyelashes. It takes about two minutes. I’m rather lucky that my skin looks healthy otherwise and I don’t need foundation and all that jazz.

If I don’t apply the eye makeup, I look really washed out. It does help me to look much healthier. I feel a bit more confident with the eye makeup on.

Wearing Wigs

I started wearing wigs while my hair was falling out. Paula Young has volumizers that I purchased when my hair was still in the patchy loss phase. They helped to cover the bald spots and gave me great-looking hair. It was fake, of course, but I liked the way that I looked.

Paula Young has inexpensive wigs and I’m pretty cheap when it comes to beauty products. It took me a year or two before I invested in human hair wigs. I was so happy when I did because they felt so much softer against my skin. They also looked a little better. (But most people don’t even notice unless they are hairstylists.)

I recently decided to try a headband wig from Paula Young. It is so fun with the beachy waves. I do like the feel of the headband against my skin instead of the typical wig construction. It fits snugly. The volume feels a bit 80’s to me. My natural hair was stick straight, so it is quite the adjustment but kind of fun.

Paula Young headband wig
Paula Young headband wig

Finding an Alopecia Universalis Cure

At some point, I realized that I couldn’t focus all my attention on finding an alopecia Universalis cure. I was getting disappointed by the things that I was trying. However, I recently came across Alopecia Angel online. She sells a program to help people with autoimmune hair loss. I will start her program in January.

I’m pretty excited to find someone who has had success helping people who have had complete hair loss. All the other treatments that I’ve tried haven’t been too optimistic about healing hair loss that is from an autoimmune disease and over a decade long.

I’m very hopeful and plan on blogging about Alopecia Angel’s program. If it works, I want other people with alopecia to know about it. If it doesn’t, I want to give others a fair warning.

Check out my Plan to Cure Alopecia Universalis as it stands today.

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