From a silent reader to sharing my story...

For over 5 years, I have been a silent reader. I would visit the Alopecia UK website and social media platforms, read every post, take in every story… and then close the pages without saying a word. I was comforted by the fact I wasn’t alone, but I wasn’t ready to share my own journey.

When my hair first began to fall out, I felt like I was losing more than just hair — I was losing my confidence, my identity, my beauty, my existence and a sense of myself. It’s hard to explain the mix of grief, fear, and uncertainty unless you’ve lived it. Every time I thought I saw light at the end of the tunnel, it would suddenly go dark again, with clumps and clumps of hair falling out. And the truth is, I’m still not ‘recovered’. I’m still navigating the emotional, physical, and financial impacts of alopecia. But I’ve learned that recovery isn’t always about going back to how things were - sometimes it’s about finding a new you.

My alopecia journey began on 15th August 2020, during the COVID-19 pandemic when I was 28 years old. I was casually getting ready in the morning, looking forward to the weekend after a stressful week working, when my sister spotted something in my hair. At first, she thought it was a plaster stuck in my hair, but when she looked closer, it was a small bald patch - the first of many.

After a weekend filled with tears, sleepless nights, and endless internet searches, I managed to get a telephone GP appointment the following week. As it was the pandemic, I had to send photos for the doctor to review. I was immediately diagnosed with alopecia areata. I still remember that moment - my heart sank, I burst into tears, and I felt completely numb, wondering what the future would hold. I always had beautiful, long, luscious brown hair. I was often told I had ‘princess hair’. So to start losing it felt like my world was crumbling down. 

The GP prescribed steroid cream, which didn’t have any effect. I was fortunate to have private medical insurance through my workplace and booked an appointment with a dermatologist, who also prescribed steroid cream but again, this did not help. Weeks passed, and my hair continued falling out in clumps. By then, I had lost nearly 50% of it. I was referred to another private dermatologist in Harley Street, London, who prescribed a long course of oral steroids and vitamins. I was advised by the dermatologist that my alopecia may have been caused by a sudden stressful period in my life. 

Over the months that followed, my life became a blur as my hair continued falling out in clumps. I was losing body hair too - my eyelashes, eyebrows, facial hair and body hair. I knew I would soon need a wig and began mentally preparing myself and started researching frantically for one that matched my natural colour and style. This was hard during lockdown, relying solely on photos online. Around this time, I also began cognitive behavioural therapy (CBT), which really helped me process what was happening and gave me coping techniques.

For months, I pinned the fallen hair onto the strands that remained on my scalp, in the hope that this was not my reality. I wasn’t ready to lose my hair. I even kept every strand I found in a plastic bag. My hair became so matted, as I wasn’t washing it and was trying to keep all the fallen hair pinned in place. Until one night, I woke up in the middle of the night, woke up my family, and asked them to finally cut it all off. My beautiful hair. My identity. And yet, in that moment, I felt free, like I had taken back some control.

Even though the pandemic shielded me from the world for a while, I still worried about what would happen once lockdown ended. How would I face anyone? Or go back to work? Or see friends and family? I didn’t look the same. I wasn’t the same. I felt broken.

I started practicing manifestation. I manifested that I would smile again and celebrate my 30th birthday, embracing and celebrating my journey with alopecia. And I did. I celebrated with my close friends and family - my circle of trust, the people who were there with me every step of the way.

What no one talks about is the financial burden that comes with alopecia - the wigs, hair extensions, medication (steroids and injections), private medical consultations, hoodies, hats and so much more. The medication also brought side effects too - I’ve gained over 20kg over the last 5 years, which only added to my struggle with self-confidence.

With treatment, some hair regrowth has been possible. But alopecia remains a part of my daily life. I still experience patches of hair loss on my scalp, eyebrows, eyelashes, face, and body. The uncertainty never fully disappears.

In the midst of all this, Alopecia UK has given me more than information and advice - it has given me a community. Over time, it has helped me rebuild my confidence and see that my worth isn’t tied to my hair. I’ve discovered resilience and strength I never knew I had, and a life that feels whole again.

So today, I step out of the shadows. Alopecia will not define me. Whilst I am still not comfortable to have my face included with my story, I am pleased to add my voice to this incredible community that has held me up without even knowing it.

I was proud to do some fundraising for Alopecia UK in September last year. I held a floral workshop and it was great to raise awareness and during Alopecia Awareness Month. 

To anyone reading this who is still silent, take your time. Know you are not alone. This is a safe space, a circle of trust. When you’re ready, we’ll be here. Remember, one step at a time…