Thank you again Geraldine for sharing your inspiring brave story and your truly beautiful pictures of your head. The artwork is just stunning!!
I come from three generations of alopecia sufferers. And if the truth be known, it could be four as there was an Aunt on my mothers’ side who wore wigs but we were never allowed talk about that. I suppose times were different back then. My Mum lost all her hair in her early thirties and wore a wig at all times. She never accepted being bald or even discussing it. The only thing she would say was that it happened quickly. She would often recount to us that she woke one morning to find her hair on the pillow beside her, like a bird’s nest! I don’t know if this is true as I was too young to be conscious of her hair loss but it is certainly the story she stuck to up until she passed away in 2016.
I was luckier. I didn’t lose all my hair until I was 50. As a kid, I had the tiniest of bald patches (about the size of the top of my little finger) at the start of my hairline just where I parted my hair. It never bothered me and never grew in size. Then after my second child was born I began to notice more hair than usual in the drain after a shower and all of a sudden, I had two gold ball sized bald patches at the back of my head. I freaked out about this at the time as I knew how alopecia had affected my Mum. My diet and fitness level at the time were good but I was in a stressful job as I’m a freelance filmmaker and was about to embark on making my second feature film. I spent a lot of precious time and money on specialists but didn’t find them helpful. Eventually I found a wonderful acupuncturist and after about six sessions the hair grew back.………until that is, New Year’s Eve, 2008. I had been working very long hours all autumn and was also going through the menopause when suddenly I experienced the true horror show of clumps of hair falling down the drain every time I showered. It was horrendous and happened so fast. It really was like being in my very own horror movie but once the hair was gone, I just picked myself up and got on with life, as they say. I worked right through that stressful period but I absolutely hated going to a wig shop as I was never one for styled hair or hairdressers.
The day I wore my first wig into work two colleagues actually got up from the table and laughed their way out of the room. That was hard but others around me were really supportive so I ditched the wig and bought loads of nice scarves which I wear all the time. I took comfort in the fact that I still had my lovely eyelashes and eyebrows but alas six months after I lost my hair, I lost them too. I never cried over my hair loss – it’s not a life-threatening disease and I don’t suffer any physical pain and I know life can be so much tougher for others but I wasn’t prepared for the grief and loss I experienced when my sixteen-year old son lost all his hair. My son has a hearing disability you see, and he wears aids on both ears so he stopped going to school because they wouldn’t allow him to wear his beanie hat in class and he said he looked like a freak without it. I cried all the time then, hiding in the bathroom at home and in work or walking the dog or in the car in city traffic jams. I felt utterly stupid because I’m not a crier but I just couldn’t stop the tears from flowing. Cian did return to school the next year and his mates were fantastic because they stood up for him in many tricky situations that could have pushed him out of school again. After two years of living abroad he’s back in Ireland and in college. He is a young confident twenty something and like you Amber, he wears his alopecia lightly. He does not let it define who he is and I am so proud of him for that. Cian gave me the strength to do what I have always wanted, to get my head tattooed. I am sending you a pic with this email. Now, in the summertime (I just find it too damn cold in winter), my bald head is a great conversation piece. I do think sharing stories can help others know its early days for
My next mission is to make a documentary about this condition as I know that it is a growing problem and I would love to find out more about the current research. I have never written to anyone about my hair loss until I heard a mum and daughter on an RTE radio show last December https://www.rte.ie/radio/utils/radioplayer/rteradioweb.html#!rii=b9_21476487_19148_10-12-2018_)
My heart went out to the mum, Yvonne as she was going through her hair loss at the time and it was very emotional and stressful for her. I wrote to the show and asked them to send on my letter to her. I’m not really one for support groups but after hearing Yvonne and her daughter Shannon going live on radio, I just felt that I wanted to reach out to them, to let them know they are not alone. So, here’s a link to me on Ray D’Arcy
If we want to truly understand this auto immune condition, then sharing stories is vital. Thanks for taking that brave step to be open about your own story and best wishes for the future.