When you have trichotillomania, every new patient form leaves you asking yourself: Do I need to tell them I have trichotillomania? Does my primary care physician need to know? Yes. Urgent care doctor I will only see once? Probably not. (I understand that others may always disclose their trichotillomania - that's completely ok; I just choose not to.)  

A few weeks ago, I went to the optometrist for my not-so-annual eye exam. I broke my glasses over a year ago and was about two weeks away from running out of my contacts. I was in desperate need of a new prescription. 

It didn't take long into the eye exam for the doctor to notice I'm missing my upper lashes. 

"I have trichotillomania - that's why I'm missing my eyelashes," I said. 

"You really need your lashes. They protect you from getting dust in your eyes. I'm putting this down on your chart. We don't have trichotillomania in the computer, so I'm just going to put down madarosis instead."

What is madarosis?

No other doctor had mentioned madarosis in the 20 years I've had trichotillomania. Did I actually have madarosis like the docotor said, or was he diagnosing me with something I didn't actually have because "trichotillomania" wasn't in his computer system. 

I got home and immediately researched the mystery diagnosis. What I found shocked me. 

Madarosis is a term that refers to loss of eyebrows or eyelashes. This specific type of hair loss has numerous causes, including trichotillomania, certain infections, drugs, and dermatological conditions. 

So yes, I do have madarosis - my eyelashes have been missing for quite some time now. Not everyone with trichotillomania will have madarosis - only those who pull from their eyebrows and eyelashses can be classified as having it. 

The More You Know

Sharing that you have trichotillomania with a new doctor can be a very vulnerable and stressful experience. I've encountered too many doctors who are dismissive of the disorder; or worse, don't know what trichotillomania is. 

I strongly urge everyone with trichotillomania to read up on your disorder and know how to talk to you doctor about your trich. Since trichotillomania is a chronic condition for many people, your conversations may be recurrent and ongoing.

Not knowing what madarosis was at my optometrist appointment made me feel like I wasn't in control of the trichotillomania conversation. Moving forward, I'll know what madarosis is - it will be a term that I can add to my trichotillomania conversation with my doctors.   

One of the first steps of claiming ownership of your trichotillomania is feeling comfortable discussing your disorder - not with everyone, but at least a select few that include at least one doctor. If you haven't already done so, think about how you want these conversations to go, but be open to having them expand to include new terms and new realizations. The more we know about our disorder, the more comfortable and confident we will feel talking about it.

For more information about madarosis, check out this article: Madarosis: A Marker of Maladies