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Alopecia Areata Support Network

Women With Alopecia Areata Support Network Blog

Grief and Loss Along the Alopecia Areata Journey

Posted by Thea Chassin

March 19, 2015 at 12:59 PM

A recent Opinionator article in the NY Times, Getting Grief Right really struck a few cords. For many with a new alopecia areata diagnosis, feelings of loss increase as hair decreases. Because these same words resonate in the BGDL inbox  it made us consider: Is there a right way? Is grief a one-way ticket on a predictable path?  We wanted to know more.

Curious for spontaneous reactions from our network, we posted to social media. "Have 'grief' and 'loss' felt familiar?" The responses were emphatic and swift. "Yes, yes and yes ... that was me!"

Below, we have candid comments from the first enthusiastic responders. We asked about tangible loss and intagible loss.

Next week, we'll tell you about turning points for each of these women finding their own way to restoration. We'll also have BGDL take-away tips inspired by the Times article.

Sad Woman with Hair Loss


What It Felt Like

Laura H: onset age 36

     "I lost every hair within a month's time. It was not just the tangible total loss of a body part ---- it was like a death. In the very first week, it was like rain falling and didn't stop until every hair was gone. It progressed very fast.  

     I still feel the effects of PTSD from that onset. I've had some dark times. I felt a loss of control."

Karen: onset age 42

     "It started with one spot on the top of my head. A few weeks later I had 2 spots, then 5. Six weeks later I had 26 bald spots (my son counted them). Within a year I was almost completely bald. Now 15 months  from the start, what little is left is still falling out.

    I felt like I was losing my identity every time I saw my reflection in the mirror.

    I felt like I was being punished (for something terrible that I had done) - karma rearing its ugly head (no pun intended)"

 Laura A. W.: onset age 16

     "In ten weeks time it was all gone. I remember first noticing hairless areas above and behind my ears. My entire scalp hair thinned rather uniformly including body hair and eyebrows. I had eyelashes only until age 28. There were patches from 17 to 20, but since 20 no regrowth.

     I had a sense of loss which was both physical and sort of emotional. For me it was like a loss of what my body/appearance image had been prior to my alopecia. My self-esteem was shattered but has since been re-built. 

       The intangible sense of loss was the destruction of my going-to-college-after-high school dream. I had envisioned what that experience would be. There was no way I could have faced a dormitory setting while wrestling with the reality of removing my wig at night in front of a college roommate. This was before I was okay being seen without a wig."

Magen: mother of a daughter with onset nearing 7th birthday

     "It progressed quickly. She has two bald spots, one on each side of her forehead with diffuse loss, too. She’s having some regrowth with vellus hair starting to regain pigment.

      I have a harder time with it than she does. For me the loss is physical loss of the hair.  So far we can hide the hair loss pretty well. She knows that she might lose all her hair. I’m still trying to accept this for my daughter's future. 

     My daughter and I respond differently. She says: 'It’s just hair, and the only thing that matters is what’s on the inside.'" 



Our deep thanks to the women sharing their responses on this emotional topic. We think you will enjoy the full Times article, too, for alopecia reasons and life in general. Can you relate to this topic? Please share in the comments below. 




Topics: coping with alopecia