After chatting with my colleague Amy (Operations Manager for Alopecia UK) she was telling me about someone who had recently joined one of our online Alopecia Café support group meetings. This person was nervous about attending a meeting for the first time. Whilst they were very worried and upset about their hair loss, they hadn’t lost all of their hair, and they were unsure if their personal alopecia journey would fit in with the experiences of others, recognising that some people with alopecia have lost all their hair.   

As Amy and I were talking, I realised I could really relate to this feeling as well. Before working for Alopecia UK, when I was concerned about my hair loss, I wasn’t sure where my experience fitted in either. My hair was falling out so much, yet on the flip side, no one (aside from my family) had any idea what was going on for me. I still had hair on my head which meant my hair loss wasn't obviously visible to others. From an outsider’s perspective, I still had a lot of hair. That’s when Amy said: “Hey, you should write about this!”.   

I won’t lie, I have found it hard to articulate my thoughts and feelings about my alopecia story, because, honestly I have felt like a bit of fraud. So, here we go; this is my experience of alopecia, as someone who nobody knew actually had alopecia!  

Since the age of around 14, I have experienced reoccurring episodes of telogen effluvium. As I’ve aged, the gap between each episode has decreased, with the episode itself lasting longer each time, and being more severe with each occurrence.  

Now, I was the kid at school with the thick frizzy hair, probably the last person you’d think was worried about losing their hair. Looking back though, I did have a couple of friends say once or twice that I had bald spots, but it didn’t seem to bother me at the time for some reason.   

This pattern of diffuse shedding/ regrowth happened every year or two until 2015, a few months after I left university. I was having another shed, but this time it did not stop after one month…or two. I remember saying to my boyfriend at the time: “You do believe me, don’t you? My hair will not stop falling out! I can see my scalp”. I remember his response because I felt a sense of relief, but then also fear. He said: “Kelly, of course I believe you…your hair is EVERYWHERE. I’ve been pulling hairs out of our dinner for weeks!”.  

By this point I hated washing or brushing my hair, or even looking in the bathroom mirror as the light highlighted my thinning hair. I was too embarrassed to go to the hairdresser, so I asked a housemate to cut my hair as I did not want the strands to be so long.  

One day, as I ran my fingers through my hair and found a bald spot about the size of a 10p coin. I remember thinking, this was it. After all these years, this is what it has been building to. Then I noticed the patch getting bigger.  

For me, I’ve always had a tendency to worry about things, so I immediately saw a dermatologist who diagnosed me with alopecia areata and reoccurring telogen effluvium. She did throw around the possibility of androgenetic alopecia, but settled on alopecia areata and telogen effluvium; lucky me, not one but two types of hair loss!  

I trawled through the internet, found the Alopecia UK website and absorbed all the information I could find. Logically, I knew the charity supported people with all types of hair loss, but I had gone from worrying about losing my hair to thinking: “Do I have too much hair at the moment to ask for help?”. Now I work for the charity, I kick myself for having these thoughts. If I had picked up the phone then, I would have found the valuable peer support, that Alopecia UK does so well, long ago! 

In 80% of cases, people who experience alopecia areata are like me; a few small patches that may come and go. It’s the same with telogen effluvium; for most people, it's a temporary thing. The problem is, this doesn’t capture the psychological and emotional impact of alopecia at all. Each time my hair sheds, I still have the same thoughts of: “Will this be the time it doesn’t stop?”. Whilst the extent of my alopecia is less extensive, I still feel anxious about the uncertainty of the condition.  

At the moment, I swing between full regrowth and alopecia areata. I have thick hair now, but in the back of my head I think: “…but for how long?”. This is just my own mental baggage that I need to address, I think.  

So, what would I say to someone who is reading this? Please get in touch with us for support if you are worried about hair loss. We support people with all types of hair loss, whether that be a single patch, general thinning, total hair loss or anywhere in between. I am also the Support Group Lead for London, so please do pop over to the group page to find out more about our meetings. 

I also hope my story shows hair loss affects lots of people in many different ways. How many other stories are out there ready to be told?

Finally, maybe I can offer a little ray of sunshine to some people with alopecia. Aside from some small patches, I haven’t had a significant telogen effluvium shed since joining the charity – which I appreciate is totally ironic!