When Did I Stop Thinking About My Alopecia?

Recently, I found myself wondering something.  When did I stop thinking about my alopecia?

When I first lost my hair, it was impossible not to think about it. I thought about it all the time. Whenever I washed or brushed the strands I had left, when I stared back at the bald reflection in the mirror that I no longer recognized, when I wondered if I would ever find love again. When I hid so no one would find my secret.

In those early years it occupied a lot of space in my mind. Not always in a dramatic way, but it was there.

Over time, something changed, though I can’t point to a specific moment when it happened.

There wasn’t a day when I suddenly woke up and thought, “I’ve accepted this.”

Life simply kept moving.

There was work, relationships, building Alopecia World, and everyday life. Slowly, other things began filling the space that alopecia once occupied.

One day, I realized something surprising.

Hours — sometimes even days — had gone by without me thinking about my alopecia at all.

Not because it disappeared. Not because I stopped having it.
But because it had stopped being the center of everything.

For many of us there was a period of wrestling with it — the questions, the frustration, sometimes even pleading for things to go back to the way they were. No one simply wakes up one day and is fine with it.

And one day I realized that alopecia had quietly moved into the background of my life.

For those who are still in the early stages, where it feels like it occupies every thought, I want you to know that it doesn’t always stay that way.

I’m curious about others here.

If you’ve lived with alopecia for a long time, have you ever noticed when it stopped occupying so much space in your thoughts?

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Comment by Melissa Albrecht 9 hours ago

I've had alopecia universalis since my early thirties and now I'm in my early fifties.  At first, I was really angry that this was my lot in life. I was nervous that every interaction I had out in the world was going be awkward and embarrassing as someone might begin realizing I was wearing wig. I felt like a freak and wanted to never leave the house. I felt so unattractive and unfeminine. It took a toll on my marriage and my parenting as I didn't want to go to my child's sports events and performances. I stopped thinking about it when I found a wig that I felt good in and that didn't itch or shift around but also at some point I realized that people who looked didn't have the empathy to realize they should not stare at my hairline were not worth my time or energy.  It became kind of litmus test when meeting new people. If they were able to connect with me and not focus on the outside they were probably a keeper. Recently at fifty, I have realized that I have one life as far as I know and I've given enough of it to alopecia.  I am determined to get out in the world and live life while I can. 

Comment by dreamscometrue 11 hours ago

I've had alopecia universalis since I was in my mid-twies. I'm now 63 years old. I stopped thinking about my alopecia when I found a good wig that made me feel or look, 'whole'. Alopecia has taken a severe toll on my mental health, for many decades. I've suffered with depression on and off constantly. Wondering if people were staring at me because I know I look different without having any eyebrows or eyelashes. I would always do my best to wear makeup that makes me feel and look whole so that I can blend in with everyone else. It got to the point where I just do it because it's a routine. And nowadays I'm noticing there are so many people who have the same condition I have and there are so many hair stylists, makeup artists and wig makers who can make wigs who can make wigs and do makeup that makes it enjoyable. Having a plain canvas to work with. It seems like nowadays having alopecia of any kind is no longer a stigma. It seems like almost everyone is going through it or at least understand it. For me right now at this stage of my life as much as I have accepted what I have it's not going to stop me from finding a care because I believe there is one. I just think we have to think and look outside the box instead of just being told it's autoimmune because there's something about it that doesn't make sense and I hope one day I can figure out exactly what that is.

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