The word “alopecia” means hair loss. Alopecia Areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss, to total loss of all hair on the body – including ear and nose hair. Alopecia Areata is not uncommon, and current estimates suggest that 2% of the population will be affected by the condition at some point in their lifetime1. Alopecia Areata can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence, and even mental health. But there is hope. Jo shares her personal and moving story.
One day at work in July 2019, a friend asked me if I had burnt my hair with my hair straightener. She noticed a small 20 cent sized patch of missing hair. I had never noticed it. I saw my GP who referred me to a dermatologist who diagnosed me with Alopecia Areata (AA). Alopecia was definitely something I had heard of. I always assumed Alopecia was the complete loss of hair and not small circle patches.
Rapidly, that 1 small patch transformed into an AA ophiasis pattern (a unique pattern of hair loss, where the hair around the entire outside of my head fell out). Losing my hair and identity was incredibly traumatising and upsetting. I had no history of AA and prided myself on how fit, active and healthy I was. As I have now learned, AA is an autoimmune condition and can impact you at any age and health status.
Despite being a very confident person, I only told my partner, parents, and brother about my condition. I was embarrassed, fearful, and sad that I no longer looked like ‘me’ anymore. The one blessing of COVID-19 was I didn’t have to leave home and answer people’s questions about my hair.
AA is a hard illness to sit within yourself. There is no cure and not all treatments work for everyone. Unfortunately for me, AA ophiasis pattern is very rare and also very resistant to treatment.
I feel very lucky to have a family who works in the medical field so discussing treatment options and medication came naturally. I joined AAAF (Australia Alopecia Areata Foundation) for support, read medical journal articles on new treatments, spoke to my medical team, and joined other support networks.
As a psychologist, the strategies I ask my clients to use, I had to apply to myself included deep breathing, mindfulness, grounding, self-acceptance, and rejection of traditional beauty standards. I am grateful that I know my partner and family love me no matter what. I feel that having their support also helped me to be brave. There were lots of nights I laid awake feeling anxious and wondering “what if I lose all my hair?” “what if I am like this forever?”.
After 2 years of treatment which included- painful injections, an intense steroid medication, and very expensive autoimmune suppressant medication, I have had some hair re-growth. In April 2021, I relapsed and some new patches formed with incredibly rapid hair loss.
I also started wearing wigs which was another journey in itself. The anxiety of “what if people notice I am wearing a wig and ask me about it?” is huge and one I still have not faced. Other than my family, I have told no one I wear a wig. I still haven’t come to terms with that in myself.
In this picture of me, I was in “remission” and only had small patches easy to cover with my long hair sections. Flares and recurrence can happen at any time, so this disease never leaves me completely and I need to manage my way through the ups and downs.
The financial burden I have carried from multiple treatments, expensive medication, and wigs (none is subsidised) is approximately $15,000 to date. I was fortunate that I have good health literacy, family support, and financial stability to try to fight my AA.
Today I have done a lot of work to accept AA in myself and what it means for me moving forwards. In the morning I take my medication, put my wig on and go about my day as a psychologist. I have to see my dermatologist regularly to manage my hair loss. I often remind myself that AA is not my fault and I did not choose this. I have made peace with my condition and know my worth is not defined by my hair or lack thereof.
1. Australia Alopecia Areata Foundation. About Alopecia Areata. About Alopecia Areata | Australia Alopecia Areata Foundation (aaaf.org.au). Accessed 20/01/2022