So, September is upon us which means: Alopecia Awareness Month.
I have been overwhelmed by the support people are showing me but I am saving all of the fundraising/awareness raising that’s taking part for a blog at the end of the month!
I’ve thought a lot about what I’d like to post during the month and wanted to do something different. I’ve written extensively about my experience with alopecia so I thought it would be interesting to have some guest posts from others who are living with the disease or those who don’t have the disease but have friends or family members that do.
Talking about our feelings and experiences can be very hard, but knowing there are people out there who can empathise, support and help, makes all the difference. So, here it is, I am excited to publish my first guest post by someone who also lives with alopecia. They have taken the brave step to writing about their experiences after suffering with the disease for ten years.
“My relationship with alopecia began when I was twenty and found a small coin shaped patch at the back of my head. At that point I wasn’t too worried and after being reassured by the doctor that it would go away, I began to forget about it. However, it didn’t go away.
Gradually over the course of a year I lost a quarter of my hair including some of my eyebrow hair. At that point I went to a dermatologist who confirmed that it was alopecia, that the cause was autoimmune and that it was unlikely to come back. Following the appointment I realised that I was going to need a wig (I hate the word) and this whole topic caused a lot of friction at home. This was mainly because I was mourning the loss of my hair and I wasn’t ready to accept that it would never grow back but also because of my parent’s concerns and sadness that this was happening to me.
Then came the hard part of choosing a wig that I could wear and not feel like I was going to a fancy dress party! For me it was important that my wig looked natural, that it was inconspicuous. I wanted to blend in and not to be stared at.
After finding a wig that I was comfortable with I began to feel more relaxed about my alopecia and no longer self-conscious about going outside in case a gust of wind exposed my bald spots! When I was twenty-one my hair began to grow back; beginning first with my eyebrows and then my hair. It grew back to the point that I no longer had to wear my wig but I did still have some patches where hair would not grow. Inevitably, my hair began to fall out again and this, on reflection, was the hardest point in my relationship with alopecia.
I began to feel very self-conscious about going out again, I lost my confidence and just felt generally miserable. I had to go back to wearing a wig and it took all of my inner strength and bravery for me to accept that I was back to square one.
For the next two years, with the help of my wig, I continued my life with regular normality. My hair would occasionally grow back in small patches and then fall out again but because it was under my wig I didn’t really care. It was only after a particularly stressful time at work when my eyelashes began to fall out, that I began to feel the impact of alopecia once more. Watching my eyelashes come out one by one and knowing that they probably wouldn’t come back was heartbreaking. Alopecia was taking the last thing that I had, my eyelashes. It seems silly but they were the last hairs that I had that were real, that were mine.
Still, I didn’t let it beat me. I looked into having eyelash extensions and semi permanent make-up. I settled on semi permanent make-up and I have since had both my eyebrows and eyeliner tattooed so that I no longer looked like an alien in the mirror! A big part of alopecia is accepting the person that you see looking back at you in the mirror. Most of the time I do accept what I see and I look at myself without my hair and don’t cry, but sometimes I do wonder what I would look like with my own hair again. Looking at old photographs of myself does make me feel sad and I do miss what I had.
I often wonder how the old me in the photograph, with her own hair, would have reacted if she knew what was to come. If I could speak to myself before alopecia I would tell myself that it will be ok, that I will be ok and that alopecia shouldn’t stop me from living my life.
There are certain things that I feel I can’t do like go swimming and put my head under the water (my eyelashes fall off!) but that’s a small price to pay to be able to continue to live my life with some degree of normality.
Alopecia is a part of me and although it has changed me as a person, I don’t want it to define me. I accept that I will most likely always have it and I’m not prepared to let it stop me going out and living my life.”
I read this post and found I related to so many of the issues raised. Like I said, knowing that there is an opportunity to network and talk to others who truly understand is a huge relief. So I’d like to thank the author for being brave enough to share their story and experiences of living with alopecia.
Remember to take photos and send them to me if you do any awareness/money raising activities – Fun Hat Friday is an easy to organise event and you’ll have a laugh along the way! I have created a primary and secondary Power Point if you’d like to do something in schools, just contact me and I’ll be happy to ping it over.
Please share the blog and let’s make sure #alopeciaawarenessmonth educates more people on a disease that impacts on so many people.