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A story about living with alopecia

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Alopecia and Mental Health Awareness Day


As the world marked Mental Health Awareness Day last week, I think it's only seems right to give space to recognise the impact that alopecia has on our mental health, not just on World Mental Health Day, but every day.


It's the mental load, the emotional rollercoaster and ever present impression that living with a visual difference has on your life.


From the sighting of your very first patch, alopecia is always with you. Every day when you look in the mirror, brush your hair or touch your head, alopecia is there. Even if you are someone who experiences hair regrowth, there is always that small voice in the back of your mind that the alopecia will return.


My journey with alopecia has been, as I think it is with most people, unexpected... turbulent... confusing... frustrating... upsetting... but I do consider myself fortunate to now be able to say, empowering.


They say that with any mental health challenge, talking is a powerful tool and the first step. When it comes to my alopecia journey, I couldn't agree more. I'm naturally a 'talker' so at least for me, that wasn't a hurdle that I faced, but talking about alopecia in particular was a new hurdle.


At first, I began by with speaking with my partner and my immediate family. I then mentioned it to my closest friends and from that point, it became easier and sort of snowballed. Now, I've spoken with family, friends, other people with alopecia, a counsellor at Mid Kent Mind, Alopecia UK, I've shared on social media and recently I even spoke publicly in front of an audience.


At some point, through these conversations I eventually discovered something. One day, I likened alopecia to a monster who was following me around. This idea stuck and somehow, we started to call this monster 'Trevor' (apologies to any human Trevors out there, it's nothing personal!). I didn't know at the time, but this one silly act, an in joke with my partner, a momentary coping mechanism would turn into the greatest gift that alopecia could have given me.


By naming my 'monster' I was able to talk about 'him' more. We would start saying things like 'Trevor's out' when one of my headscarves would slip. Friends who I hadn't seen since developing alopecia would casually say 'So how's Trevor?'. I was even able to moan in exasperation at Trevor when he was being 'annoying' an hour before my friend's wedding and my regrowth looked like an electrocuted, fuzzy pineapple (Not quite the look I was going for).


By personifying my alopecia I gave myself, and the people around me, the tools to talk my condition and the impact it was having on my life in a very easy and casual way. 'Trevor' enhanced my opportunities to express myself and to share the new emotions I was experiencing with others.


At first 'Trevor' helped me to come to terms with my condition, and now I embrace him. Trevor, my alopecia, is part of me. The good days and the bad days, he's there and he's staying. And now, he's welcome.


My I hope that 'Whatever Trevor' will give children and adults who have alopecia a new dialogue when it comes to alopecia. I now see my 'Trevor' as a friend who has been on many adventures with me, he's faced many challenges by my side and he's given me a new strength that I never knew I had.


Alopecia is a real challenge. Alopecia effects our mental health. But alopecia doesn't define us. Please talk about your alopecia. Talk about how it's making you feel. Talk about the research you've found. Talk about the hat you tried on but hated because it's not your style. Talk about the fuzzy re-growth tufts that you can't control. Talk about your head being cold. Talk about the anxiety you sometimes feel in social situations. Talk about it. I promise, the more you talk the easier it becomes.


If you are struggling with your mental health and how you're feeling, please reach out to a professional. My counselling was part of the Mind 'Low Cost Counselling' service, which made it accessible and consistent. They were fantastic. As are Alopecia UK who do a fantastic job of bringing our community together and advocating on our behalf. Thank you to both organisations.





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A story about living with alopecia

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