The support

In October 2016 I decided I needed to find out as much as I could about my condition and surfed the internet googling as much as I could about lichen planopilaris. I stumbled upon the British Association of Dermatologists and read all the info I found. It did not tell me however as I was unsure if this was common or who else I could seek help from. I then began visiting many sites on alopecia of any kind to try and see how many other people may have this condition and how did they cope with it? I felt surprisingly alone as no one else I knew would ever understand how difficult coping with this condition had become. I knew I needed to talk to someone but my GP was never going to be the place to find this help after my previous meetings and conversations had. I thank the day I stumbled across the alopecia uk website and I used this site to fill in any queries I still had, utilising the wealth of information available here. A few weeks later I began reading about the support groups that were held in various cities in the UK and hoped there would be one I could attend nearby. Luckily there was a meeting coming up the following week in Birmingham. I decided I needed to go.

I emailed Marie the same day introducing myself and asking if I could attend. The initial contact was like a weight lifting from my shoulders and my request was well received. I could not wait for the week to go by and I was anxious but hopeful. All week I kept reading my email over again to make sure I knew where I was going and planned the train to make sure I had time to get a coffee and find the venue, not that I could ever lose my way in grand central station. Saturday morning finally arrived and I suddenly felt sick with worry. My ever supportive partner offered to come with me but I declined. I knew this was something I needed to do myself to make sense of it all. I arrived without a hitch and walked into the meeting space to some very friendly smiling faces. Instantly feeling at ease. Marie was personable, welcoming and totally bald! Wow how brave and strong, I thought to myself. I wished I had her confidence and acceptance as only hours previous I was coming, brushing and styling my wig to ensure no one could tell my hair was falling out. I completed the new member forms and sat waiting patiently for the meeting to start. Frequently sipping on my very strong coffee trying to hide my nerves and lubricate my dry mouth.

As the meeting started we were asked to introduce ourselves and say a little about our hair loss. I sat and listened to the journeys of others attending which made me feel warm and hopeful for the first time. Not because I thought my condition would improve, or get better, or even be cured but because I had met other people who understood me and my feelings having been through it or had a similar condition which they were currently going through. I met some fabulous inspirational people that morning, one of whom started her own journey of self discovery for the first time also on that day. I would love to share their stories but the truth is it’s not the individual stories that help but the fact we are all there together with a collective experience and understanding of the trials and difficulties alopecia presents. 3 years on I am writing about these experiences as I can now make sense of the process I have been through. I truly believe Marie and Alopcia UK helped to pull me back from the depths of a depression that I was lucky to recognise. The work these volunteers do is outstanding and the people who attend and share their journeys is way more valuable than any medication, treatment or wigs the NHS could provide.