Building My Narrative Look what the Alopecia UK Facebook Group started.. Above is my first ever post in the Alopecia UK private Facebook group. I can’t believe this was only 7 years ago, it feels like a lifetime ago. I can barely remember what having hair felt like. Embracing how I look has become a part of my identity. Although it wasn’t always like that. Believe me, back in 2016, if I could have had access to treatment, I would have jumped on it. I would have slathered chilli flakes in bird-poo on my head if someone had seriously said it worked - anything at all to get my hair back. But the truth is I didn’t get to dermatology in time to be offered any treatments and I had other health conditions to manage at the same time, so it was too much juggling! I remember the initial shock of losing my hair, the tears, the shame of thinking that I had caused this and that somehow I wasn’t coping with life, with stress, with my body, with unbearable emotional pain and the hatred for the woman I saw in the mirror. I also remember the hopeless fear and disbelief that my hair was not coming back, something that I expected as it had previously happened with my smaller patches. I soon reduced my social group, pulled away from my family, cried buckets of tears, and felt very very alone! I avoided social media and photos for a year after losing my hair and had really struggled with coming to terms with looking different. That’s when I found the Alopecia UK Facebook group, and it changed my life! Being in the company of other people who “got it”, who didn’t make me feel judged, and who had good advice, gave me the confidence to understand my fear and to take control a little. Shortly after this post, and because of the confidence I developed within the group, I decided that I needed to stop wearing wigs. To me they were uncomfortable and I didn’t feel like myself in them. But to do that I knew I’d have to own the narrative so that other people couldn’t take control of my emotions, or control of me! Building your own narrative can be a powerful and empowering process. As I look back I can see that I manoeuvred a whole “coming-out” event with precision. I didn’t know it then, but it was a 6 month operation. Here’s what I did: 1. It started with getting some photos of myself done where I felt I looked and felt feminine, strong and in control (see one of those photos below). That meant finding a good photographer and a safe enclosed studio. I held onto those photos privately for ages, just looking at them and comparing them to the few photos I took at me in the early days of my shedding. I could not believe I was looking at the same woman! Those first images were the foundations of a change in my self-esteem and gave me the drive to do the next steps. 2. I reflected on my experiences, considered my challenges and triumphs and the unique aspects of my journey. One thing I loved then and still love now is that looking different has given me new insights to how people perceive one another. At times I have thrived on small kindnesses and at other times any extra attention underlines an awful fear that looking different will lead to rejection. 3. I spent quite a lot of time in talking therapy dealing with the trauma of enforced physical change, the lack of control and the devastating effects of feeling shame. But also reflecting on my strengths and qualities so that I could see my positive attributes. There was a sense of self-acceptance that came from this. 4. I immersed myself in the inspiring stories that I saw in our Facebook group. Stories from people who shared their experiences of living well with alopecia, with experimenting with life and of their successes. Their posts provided me guidance and helped me feel connected and empowered. 5. Framing my narrative was the hardest part. I needed it to be received well and if I was to stay emotionally safe then I needed to choose what I disclosed, rather than revealing things I wasn’t ready to and exposing myself to emotional pain. I thought long and hard about what I wanted the central message and impact to be. I didn’t want to come across as a whiner, or even as a victim (although I felt it at times). I wanted to tell a story that promoted acceptance and the lessons that I had learned. And I wanted to use this as an opportunity to grow my fundraising for my Alopecia UK Great North Run place. 6. Next, I decided how and where to share my story. I decided to post on Facebook with the JustGiving link. I knew that to feel whole I would have to “come out” on LinkedIn and to my professional network, and so I wrote an article and added one of the photos. I even had some very clumsy conversations with my neighbours telling them that I didn’t want their kids to be scared of me with my new look – as I said, clumsy!!! The outcome was overwhelming support and love from all sorts of people, and if my memory serves me well, about £2,000 for Alopecia UK. It felt good! 7. Finally, I started connecting more with people who needed support rather than being the person who was asking for help. Even today, this final step continues to help me more than all the other steps put together! I really didn’t know that I was following a series of steps when I built my narrative but as you can see, I was. Now 7 years on I am changed again. I am considering playing with wigs again, not for everyday but for the freedom to change my looks at will. I’m frustrated, (more than frustrated - please insert whatever sweary word you like, and you’ll get close to how I feel), that in the summer I get some fluff that grow’s randomly on my head and disappears before autumn. My work has also changed, and I am proud to lead this incredible charity which means I represent many of you at all sorts of forums so that that patients with alopecia are heard. I advocate that people with alopecia should be able to live well and free of discrimination. I also fight for our rights and access to treatment because we deserve better care and more choice. But alongside all that change I remain clear; each person who has lingered in my story has their own interpretation. It’s their version, it’s not mine. The only narrative that really matters is the one that belongs to me when I tell it in my words. Remember, your narrative is unique to you, and it can evolve over time. Embrace your individuality, be proud of your story, and, if you can, use it as a tool to empower yourself and make a positive impact on others.