Invisible challenges and a visible difference

Last week I gave a presentation to my former employer, at their conference attended by around 700 people. It was exhausting, challenging, emotional and yet filled me with pride, as I raised awareness of Acquired Brain Injury and Alopecia Areata. It was a great opportunity to advocate for better care for both these conditions, as well as fundraising for two small healthcare charities (Headway Thames Valley and Alopecia UK), who both ‘punch well above their weight’ to support their communities. 

The people in the room were really there to hear about my patient journey following my brain haemorrhage in 2018, involving brain surgery and 7 weeks in hospital. It was a long, slow, challenging recovery from cognitive confusion, mobility & sight issues, memory loss and neurofatigue – the often, invisible challenges that last after a brain haemorrhage, and improve slowly over years. 

But I think the audience was surprised to hear that I found my hair loss due to alopecia areata more challenging than my brain injury. My alopecia diagnosis in March 2020 brought me lots of challenging feelings and left me questioning, 'Why me, why now?!'. It seemed so unfair. It caused me anxiety and depression and with my cognitive limitations and then my hair loss, I really didn’t want to go out or socialise at all. The combination of invisible challenges from my brain injury and the visible difference of being bald was a difficult one to live with. 

Alopecia UK gave me the support I needed to come to terms with my visible difference and accept my hair loss. They helped me through my alopecia journey. In February 2021, I became a Trustee for Alopecia UK. I wanted to support the charity who had helped me with the psychosocial challenges of alopecia areata. With a background in healthcare marketing, advocacy and policy, I also wanted to use my understanding to advocate for equity in care and medicines access. 

I was so proud to have the opportunity to support Alopecia UK with my presentation. I did not expect to get a round of applause as I took my wig off. I am happy to be a wig wearer, but I wanted to show – ‘this is me now’ and to help ‘normalise’ baldness in women.

I was delighted by the donations made by friends and colleagues, supported by my former company in matched donations. The end result was £2,000 to both Headway Thames Valley and Alopecia UK. I know what a difference amounts like this make to small charities like Headway and AUK.

As Alopecia UK launches its 'No Wrapping Required' Christmas appeal this week, I would like to encourage anyone reading this to consider making a regular donation to Alopecia UK. I am proud to be a regular donor myself and know that every regular donation, however small, really helps towards sustainability. 

Or perhaps you could fundraise, or volunteer? I recommend getting involved in some way - it's given me so much more positivity about my alopecia than I ever thought was possible.