September was alopecia areata awareness month so I wrote up this article to help educate my colleagues at SCV-CAMFT about alopecia areata, the stages of grief and loss one goes through with this condition, and the power of group therapy to help those who suffer from it and other unique conditions.
The beginning of my journey toward becoming an LMFT happened by chance in 2006 when I contracted an autoimmune disease called alopecia universalis (AU). Alopecia universalis is the most rare form of alopecia areata (AA), which is characterized by rapid and unexpected hair loss over the entire epidermis. In alopecia areata, the affected hair follicles are mistakenly attacked by a person's own immune system (white blood cells), resulting in the arrest of the hair growth stage. Alopecia areata usually starts with one or more small, round, smooth bald patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or, as in my case, complete body hair loss (alopecia universalis). Eyebrows, eyelashes, and a full head of hair were all gone in six weeks.
Getting AU was like getting a body blow from Mike Tyson. I was knocked down for the count. While AU is not life threatening, it is life altering. Initially, I was determined to defeat the disease with everything modern medicine had to offer. What I discovered is that the sum total of the medical community's knowledge of AU is that there is no known cause, there is no known cure, and there is no common progression. All my hair could come back tomorrow, or it could never come back. No one knows what will happen or why it happened. I found AU to be a psychological minefield, very hard to wrap my brain around. I had now officially entered the world of grief & loss. All the stages were there for me: denial, anger, bargaining, depression, and finally acceptance. It took me four years to reach the acceptance stage. But first, let’s go back a few stages.
One may think, why was this so hard for him? There are plenty of bald men out there, and the bald look is in. This perception is one of the many reasons why this condition is so hard. People that don’t have alopecia areata have a hard time relating to the struggles of those that do. Alopecia areata is so difficult, in my opinion, because it has to do with a loss of identity. Whether we want to admit it or not, physical appearance is a huge part of one’s identity in today’s society. Nothing defines our physical appearance more than our hair. Take away our hair and we are unrecognizable. This rapid and dramatic change in physical appearance wreaks emotional havoc. Initially I felt AU was a horrible condition and a big black cloud that one-day just invaded my life. I went into a deep depression. My usual sources of support weren’t helping. The doctors couldn’t help. Friends and family, while they cared deeply about me, could not seem to say the right words. I heard things like “it’s only hair” and “it could be worse.”
The way I got better was with the help of a decent psychiatrist, a good psychologist, and even better group therapy. The psychiatrist prescribed anti-depressant and anti-anxiety medications in the beginning. Not wanting to take medications for the rest of my life, I found that hypnosis, combined with cognitive behavioral therapy, enabled me to cope in such a way that medications were no longer necessary. Psychological counseling helped but the biggest turning point occurred when I went to a support group meeting in San Francisco and met people going through the same struggle, people like me. I was no longer isolated and all alone. Being able to process the emotions with people who understood was invaluable.
Emotional treatment is the only reliable and effective treatment that currently exists for AA. Other alopecians were the main source of support for me on my road to recovery. I found another support group at Stanford for parents of children with alopecia. Soon I began to realize that I had AA, but AA didn’t have me. I started to volunteer at the National Alopecia Areata Foundation (NAAF) offices. Every year, I would attend the annual international NAAF conference and find healing amongst the 800 or so bald, men women and children that took over the hotel. I have now been to eleven NAAF conferences, each one an anniversary reminder of my new identity.
The first four years I went to the conferences for myself, to get help. Slowly, I started to feel ok about my condition. The next four years I went to support NAAF by selling T-shirts and to see my new set of bald lifetime friends. In the middle of all of this grief and loss, I found a new purpose in life. Instead of selling high-end sports art, I decided to help others struggling in life. I left my career in retail, went back to school and eventually got my LMFT#92542.
Today I am a co-facilitator of the SF support group, a NAAF phone contact support person, and the last several years I have lead support groups at the annual conference. The group that I originated at the NAAF conference is called “It’s OK to Feel Sad” and it’s about the stages of grief and loss associated with this condition. I do a brief slide show with much of my own experience with AA included and then we circle the chairs to talk and process the emotions. The main message of my presentation is that AA is really hard and that we shouldn’t try to conduct “business as usual” in our lives, that we should allow ourselves to feel the sadness.
In my opinion, denying the sadness will block us from progressing through the stages of grief & loss. These groups are powerful. The last couple of years I have lead groups of teens, tweens, and parents of children with AA. In addition to grief & loss groups, I also lead other groups like “Relationships & Intimacy and AA”; “It’s Hard for Men Too,” and “Living the Active Life with AA.” As you can see, the lemons of alopecia areata have turned into lemonade for me. At this point, as strange as it may sound, I wouldn’t take a cure pill if one were available.
Matt Kelley, MBA LMFT#92542 has a private practice in Menlo Park where he works with teens, individuals, families and couples and his subspecialty is alopecia. If you’d like to know more about alopecia areata, alopecia universalis, or any of the support groups you can contact him at (650) 319-6814 or through his website at www.stanfordtherapy.com.
