Accepting today: Beyond fear and loathing of alopecia universalis

The date and time of when I found my first spot is lost in the fog of what I can remember. I do recall looking at the dime size spot on the back of my head in the mirror and thinking; “I bet I’ll lose all my hair.” Worst sentence ever.

In three weeks I had another spot the size of a quarter on my chin, two half dollars on my right arm and another triplet on my left. I started shaving my face twice a day. I shaved my arms to hide the spots. More spots appeared on my head but my hair could somewhat conceal them. It never stopped. In three more weeks the spots had doubled, maybe tripled. Chunks of hair came out in the shower. I was beginning to panic. I had seen two separate doctors with two different diagnoses handed down. The first was by an older dermatologist who told me, and I quote, “This is caused by three things. Stress, Stress, and Stress. Find that source and you will be fine.” The second was more accurate but misleading. I was told I had alopecia areata and this would cycle through in about 18 months.

I remember leaving the doctor feeling relieved that this too would pass. A few months later I now had to shave my head because I couldn’t hide the spots. One eyebrow was completely gone, I had about 50% of my eyelashes left in various states, and the other eyebrow was hanging in there with about 30% left.

At the time I worked for a large company and would regularly collaborate with other people in other departments. I had explained and educated my manager about the condition. How it’s not contagious. Unfortunately some people weren’t as understanding and I was given a list of people and departments I should avoid. Eventually my role was changed so no longer interacted directly with people.

I had a relationship that ended. First I was told they weren’t attracted to me anymore. In a month it was updated to they couldn’t love someone they weren’t attracted to. Soon after it ended.

At this point in my life. Was angry. Bitter, self-loathing and untrusting, everything ugly. My hair was now all gone. My fingernails had the consistency of wax paper. Reaching into my pockets was dangerous. A simple string could rip my fingernail in half or off. I kept the tips of my fingers wrapped to save them. Poor little nubs.

I was down, broken, I felt so alone.

Then a random stranger helped turn the tides. I don’t remember who she was, but in a fleeting moment her comments and encouragement saved me. I was out in public, something I hated and I did as little as possible. I was in a coffee shop during a beautiful summer day in Portland Oregon. A beautiful bubbly bright eyed woman came in and sat next to me at the counter. She started small talk for a few minutes and then as she was getting ready to leave she touched my arm and told me how smooth my skin was and how she thought it was sexy. She left and to this day 12 years later I have never seen her again.

I immediately left and went home to process what had just happened. I hadn’t felt this good in years. I began to realize that I was looking at everything negatively. I had looked at wigs, I had applied eyelashes. Everything to try and put myself back to what I was, but I wasn’t that anymore. I had become me in the present. Who I am and there is nothing to be ashamed of.

I threw away my non-prescription glasses that I used to hide my eyebrows. I started by going to public events in the evening and nights. I felt the low light shielded me. I went dancing. I acted like it didn’t matter. You know what happened? It began to get better. I had been making the overall experience worse by focusing on all the bad.

For all of you who are struggling, there is a tomorrow. It does get better. If you can flaunt it. Make fun of it. If I am out with a group of people I like to remind the women that “Yes, my legs are longer and softer than yours, and there is nothing you can do about it.”

Maybe not everyone can do that, yet if you can find a vent, find some comical relief, it helps so much.

Every now and then a guy will walk up to me and ask how I shave my head so well. I tell them one of the following: Mayonnaise, egg yolk, oatmeal, yogurt, and avocado, whatever I can think of. Sometimes they will look at me skeptically, sometimes I will get “Hmmm, I guess if that works for you.” Either way have fun with it.

Life is too short to fester and ponder on the bad. We are all so beautiful. I haven’t met many people with AA, AT, or AU but I did meet a woman who had AU and she was with no wig, no drawn on eyebrows. With her confidence and smile she was absolutely stunning, gorgeous, someone ripped from the page of a fashion magazine. I couldn’t even talk I was dumbstruck by her presence.

We all have that in us. Each and every one of us can find it. It can be hard. I found my in humor and a smile. Think about it. If someone smiles at you, it makes you smile. Get out your smile and make everyone around you smile. Years later I don’t even think I have it, I forget. I honestly hope my hair never comes back. I love who I am. I thought I knew who I was but I never really found out until I had to dig inside and see what I was made of.

I want to wish everyone the greatest Valentine’s Day! We are all loved and absolutely fabulous! Believe it because it is true.

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Congratulations Sean . You made it through all the hard times and continued to push through until you found yourself.I can tell by reading your blog that you are a very strong young man. And you realize that this condition we have made you that strong!
Be proud you have made it through some terribly hard things that many people couldn't do.Ive had AU for forty years and our stories are very similar.
Be proud of who you are. Your a very good and strong young man.

Thanks for your kind words. 

Thanks for sharing your experience and insight.I feel for my 25 yr old son who has gone thru a similar time as you have. It was a shock and caused him to drop out of school. However he is coming out the other side and we have adjusted to the change in his looks from a blond haired long haired guy to a cool guy where his handsome face is revealed. I think it has changed our perspectives as to what is really important in people and question some values society has regarding youth and beauty. It has and will continue to be challenging but hopefully will make him stronger. 

Yes. The hardest part about alopecia is the mental coping and sorting out how it has changed you. In many cases it is our self perception that is the toughest pill to swallow. In the end I think we make a larger issue out of it. I wish you the best hope and support for you son. He will persist. Myself I had to take a step back and re-asses who I was and find my confidence again. I imagine he will come out of this a stronger more compassionate person.

Well there it is.... The best thing ill read this year :)
For sure we have amazing stories of our lives like few others. Keep smiling, living, and loving. Time here is too short.
Seriously? A girl thought you were goodlooking 12 years ago and that's how you cope with alopecia? You are single in your 40s and still have t realized that 99% of women find you unattractive. This is delusion at its finest. All I hear is cope cope cope

I'm sorry you are still finding yourself in a tough spot. Eventually things will get better for you. Hair doesn't make you. Over time you will be able to mature, and grow and look into yourself and find that. I do wish you the best.

You need to give yourself time. Stop being such an Eeyore. Some people are and love to be sad. Maybe that is you. Feelings of anger and resentment won't bring back your hair. But you can move on.

Perhaps somewhere, sometime you will find your solace.

Wow what an ugly reply! People don't fall in love with your appearance and if they do its for a short while. People fall in love with a person's soul... Your's needs fixing.

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