In 2013, I was officially diagnosed with Frontal Fibrosing Alopecia (FFA). When I was diagnosed with this hair loss condition, I had never even heard of it. Somehow, after my diagnosis, in my internet search, I was able to find an online support group for those suffering from alopecia. Within the online Alopecia Foundation site, I found a group specifically formed to support those diagnosed with FFA. It was by participating in this internet group that I first found answers to the questions I had regarding my hair loss journey.
My 70th Birthday
Wearing a hat which is pulled down to hide my hairline at the beach in Florida.
- I have learned that my journey with hair loss is similar to the journey of loss that I experienced after the death of my daughter. Certainly, the loss of one’s hair can never be compared to the loss of a loved one, but the journey itself is one also marked with five to seven stages that have been identified as the stages of grief.
- I’ve learned that my identity is not found in my hair, my appearance, or how I present to the outside world. Learning this truth, is a gift. I have more freedom in self-expression now than I had when I had a head covered with hair. My identity has nothing to do with how I look or how others see me.
- I have learned that I am resilient. Resiliency can’t be taught. Resiliency is only achieved when one goes through loss, trial, or hardship. Resiliency is also a gift because according the definition to resilience in Mirriam-Webster, it allows one to adjust to and easily accept misfortune or change. I don’t think that most of us actually easily accept misfortune or life altering change, but I do think that once we learn that we are resilient, we find it much easier to be resilient each time we meet misfortune.
- I’ve learned that the fear of losing most of one’s hair is much worse than actually losing a large portion of one’s hair. Quite honestly, in those early days after I was diagnosed with FFA, and after I saw the photos of what might happen to my hair, I was consumed by fear. After the initial shock of the diagnosis, I went into denial. I told myself I would have a different outcome than the poor women in the photos illustrating FFA which can be found in the literature about this disease, yet when my appearance began to resemble that which I feared most, I no longer was afraid over how I might look.
- I have learned that as in so many other areas of life, acceptance is the first step in getting on with the hard things in life. Acceptance itself is a process. It takes time. It takes making peace with those things over which we have no control.
|Girl Friend Party|
Wearing a wig and my favorite boots - a winning combination.
|This is not the look I was going for, but it is the one I have|
So much of my identity was tied up with my hair.
It still is, but now, I am learning a new identity. The identity I wish to project is one I have struggled to accept. It is the identity of a woman who wishes to live life as she is: nearly bald, altered on the outside, but changed on the inside. I have progressed through the stages of grief over this new appearance of mine. I’ve cried. I’ve hidden. I’ve screamed. I denied that this could really happen to me to the degree to which it has happened. I’ve spent a lot of money on cures and cover-ups. I’ve been through the bargaining stage where I thought if I just changed my life style, the creams and lotions I used, changed my diet, this condition would die out. None of that helped much or changed the advance of this progressive and permanent condition. Those words progressive and permanent, I was just sure would not apply to me when I first heard them, but those words are true, and they are my reality. Acceptance has been a long time coming, but day by day, I accept that there is so much in life that I can not change.