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It’s Not the Hair — It’s the Story We Tell Ourselves
I know we’ve had this conversation before here on Alopecia World. And I know I’ve shared my thoughts on it more than a few times. But let's take a look at it again.
A recent study out of King’s College London has stirred up some real thoughts— and I think it’s worth sharing:
Stigma driving depression in alopecia patients rather than illness ...
The researchers found that the emotional toll of alopecia isn’t always tied to how much hair you’ve lost — but more to how you feel about it, and how others make you feel. People with just a few patches felt just as emotionally impacted as those with total hair loss. And the reason? Stigma. Perception. Shame. Fear.
And honestly, many of us already knew that. Because we’ve lived it.
But here’s where I want to take this conversation a little deeper.
Yes, stigma plays a role. Absolutely.
Yes, society needs to change how it views visible difference.
But if we’re being truly honest… some of the hardest stuff? It doesn’t come from outside.
It comes from inside our own heads.
It’s not just about how people treat us.
It’s how we’ve learned to treat ourselves.
That quiet voice that says:
“You don’t look right.”
“Put the wig on, they’ll be more comfortable.”
“Don’t go out like this.”
“Why can’t I just look normal again?”
And here’s the part that might make some people uncomfortable — but it needs to be said.
Sometimes we use stigma as a shield.
Sometimes, it’s easier to point to how other people treat us than to admit the real fight is happening inside. We say, “The world doesn’t accept me,” when what we really mean is, “I haven’t accepted myself yet.”
So here’s the controversial question:
What if it’s not society holding us back anymore? What if it’s us?
That doesn’t mean the world is off the hook — far from it.
But if we’re still hiding, still waiting for approval, still shrinking from our own reflection…
Maybe it’s time to stop giving that power away.
So now I’m turning it back to you:
- When you think about your alopecia, how much of your struggle is external… and how much is internal?
- What beliefs or fears did you absorb early on that you’re still unlearning?
- And what has helped you shift how you see yourself?
Let’s make this a space where we can be honest — not just about what the world does to us, but what we do to ourselves. Because I think that’s where the real healing begins.
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Comment by JAS on Thursday
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This is such a powerful and honest reflection. Thank you for putting into words what so many feel but struggle to express. The idea that the hardest part isn’t always the hair loss itself, but the voice inside — that really resonates.
We’ve met many strong individuals living with alopecia who’ve shared similar battles with self-acceptance. This reminder that healing often starts from within is both confronting and empowering.
Grateful for this space and the conversations it opens.
— From all of us at Jas Fashion
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WOW
This is very powerful and honestly I can say both. Society and inside I struggle. I have had some very traumatic experiences when I open up to people about my alopecia. One was an ex boyfriend and the other an ex-girlfriend. I'm an easy target and I'm working on making that not so. When they got mad at what they perceived as me not accepting something about them they ridiculed me and one threated to tell everyone about my condition and the other actually told my current boyfriend of my hair loss and how I'm bald and have to wear wigs. I thankfully had already told my current boyfriend, however we travel in the same circles and I really don't want everyone knowing my situation. I have avoided going to places where I will run into her, and if I don't I leave or "drown in the crowd". I wish I could get a restraining order the amount of stress this cased made me sick to my stomach and have many sleepless nights. Some people are just cruel for no reason. I feel so helpless and that's not my usual personality. Any kind suggestions would be appreciated.
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Comment by Cheryl, Co-founder on Friday
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Hi Dee, Thank you so much for sharing this—my heart truly goes out to you.
I can relate deeply to the fear and the trauma of being exposed before you're ready, or by someone who was never entitled to share your story. One thing that eventually helped me was just… telling everyone myself. No more secrets. It was terrifying at first, but once it was out, I felt such relief. No one could weaponize it anymore. It’s like I took my power back.
In the early days, I braced myself for the comments. I expected them. That way, they didn’t catch me off guard. And over time, those comments? They just started rolling right over my head. (Pun intended 😉)
I truly believe it’s the hiding that holds us hostage. That’s what keeps us small and afraid. Not everyone deserves to know our story, but we deserve to live unburdened by it.
Thank you for reminding me of that. I’ve got another area in my life where I still need to apply this.
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Thank you Cheryl I am working on this. One day at a time
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Comment by Alopecia World on Friday
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Absolutely... In your own tune ❤️
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