Diary of an Alopecian
My name is Hayley, I’m 26, I suffer from alopecia and this is my story.
Early April this year I was sitting watching tv. I always remember it was early afternoon because loose women were on, I was playing with my hair and felt something weird on my scalp, rubbing it I was thinking what wtf!!! looked in the mirror and there to my horror was a bald patch the size of a 10p coin. I am not sure how long I sat there looking at it, maybe a minute….then I cried. My first thought was to phone my mum. I phoned her and she came straight over to my house. At this point, alopecia hadn’t even crossed my mind. I’d heard of alopecia of course but didn’t think that was what I had. I made my mum sit for about 20 mins checking my hair for more bald patches which she never found. What she said to me was ‘Hayley u have alopecia’ my reply was ‘dont be ridiculous people with alopecia have no hair’ (how naive I was) at that comment my mum googled alopecia and then I read it and cried….and cried and cried and cried. I think I cried myself to sleep that night.
The following day I phoned the doctor at 8.30 to get an emergency appointment. 10.20 was my appointment, never forget it cause I remember sitting in the waiting room with my mum and looking at the time, it was 10.30 and I was thinking I’m going to miss This Morning. My mum was moaning about how doctors always run late but I was not bothered, think it was almost 11 when my name was called and I walked into the doctors room and sat down and here in front of me was this gay 40 odd doctor with his legs crossed and said what can I do for you. I tried to speak and then came the tears….followed by more tears, my mum spoke for me and his words were with all disrespect I am the doctor and I think I should be the one making the diagnosis. when I was able to speak I asked to be referred to a dermatologist which he said was not necessary as the size of my patch wouldn’t get any bigger. He advised me to have blood tests taken. I walked out the surgery feeling awful and wished I hadn’t bothered.
Over the next few weeks, I was very aware of what I did with my hair, I didn’t dare tie it up in a tight ponytail, I brushed it when it needed it but then I found another patch…maybe 3 weeks after I found the first one. I was baffled, there was no hair on my bed covers, in the bath, the hair brush…where did it go?? That night I went to my mums and got her to check my hair, that’s when she found 3 more patches, small yes but I had 5 patches?? devastated?? gutted?? couldn’t put into words how I felt. if I’m honest those next few weeks were a total blur to me, my head was elsewhere.
It was after I sorted my head out I started noticing my hair everywhere, my blonde hair and black bed covers was a dead give away, by then I’d stopped looking at my patches but I decided I’d have a look…..2 mirrors looking at the back of my head…what a mess!!! that was my first proper breakdown, I had more patches than I did hair. I phoned my friend and said I need u here, she came over, saw the state I was in and phoned the doctors demanding an appointment. the only appointment they had that day was with Dr Barnes…..great!! so there I went back into him and he had a go at me cause I didn’t get my blood done, he then goes on to tell me he will not refer me to a dermatologist as I have still got hair there, and one of my patches are growing back. smack him in the face?? I bloody wish I had, nothing less than he deserve’s. that night I was home alone and I was thinking to myself why are u doing this to yourself, it’s all falling out anyway, why let nature do it when u can do it urself, so I tied what little I had left into a ponytail and I cut it off!
I then run myself a bath, put the mirror behind the taps, covered my head in shaving foam and shaved. It was the first time I laughed in weeks cause looking back at me in the mirror was my dad!! In all of my 26 years, it took shaving my hair off to realise I was the image of my father!! I came out the bath, upset of course but for some strange reason, I felt relief. Relieved I didn’t have to sit and count the hairs falling out anymore, relieved I didn’t have to think to myself everyday when will this end, when will it just either all fall out or all start growing back.
I put my jammies on, poured myself a glass of wine and sat down and started thinking and one of my first thoughts was SHIT how can I go out tomorrow, I have no hair and I have no wig. that was the moment I regretted what I had done, sitting here in my hand is my long (very thin) blonde ponytail, bobble intact that an hour earlier I had chopped off. Strangely enough, though I was still very calm, I didn’t cry, not once. I just phoned my mum, told her what I had done and said what do I do now. Very kindly my mum offered to pay for a wig for me, so I had an early night and woke up early googling every wig shop in Edinburgh. I phoned round and one shop had an appointment that day so me and my mum headed through to Edinburgh.
I must add that I must have looked a sight with the sun shining and me with a wooly hat and my hood up!! We arrived at the shop and from the moment we walked through that door we were treated with so much respect. I was introduced to Aimee who was going to be looking after me. Me and my mum were escorted into a little room and Aimee came in and chatted with us for a while. She asked me what type of style, colour, cut I was looking for. In all honesty, I had no idea!! she went away and came back about 5 mins later with boxes full of wigs. this is when it hit me when she was standing in front me holding up a wig. I broke down there and then and there was no stopping the tears. Aimee was lovely, you could tell she felt rather awkward but what little she said to me helped. She said I understand this isn’t easy but it has to be done so let’s make some fun out of it. And there she whipped out a long jet black wig (imagine Morticia from Adams family), and put it on her head and I laughed!! It definitely eased the moment. From there I tried on different colours, styles, lengths and in the end, I opted for a blonde wig, just past my shoulder. Very similar to what I had before. I left the shop feeling on top of the world and the happiest I’d felt for a while.
The next few weeks went good, that was until I went to a gig one night and in the toilets, a girl came up to me, in earshot of everyone and said to me I’m a hairdresser so I can tell that’s a wig’. I couldn’t believe she said it in front of everyone, I was mortified. But instead of showing her I wanted the ground to swallow up. I said that’s right my wig is all bought and paid for and I walked off. I felt proud of myself but sooooo annoyed that she just came out and said that. My worst experience was when I went to Newcastle with a friend. I was wearing a little funky outfit which went well with my little sparkly hat. We were in a pub, a little bit tipsy and got chatting to a group of rowdy lads. We were having a great time until one of the lads decided to take my hat off……and the wig went with it. The 2 seconds that I just stared at him felt like 2 minutes. what did I do?? I ran for the nearest exit which ended up the fire exit.
So here I am standing outside the back of a pub crying my eyes out with no wig or hat. About a minute later one of the other lads came out was very sweet and apologised for his friend, at this point I was livid. I wanted to go back in and smack him, what right did he have to take my hat off. I managed to get a bit courage in me and walk back in that pub. The boy who took my hat off had gone. What was left was a note in my bag which said I’m so, so sorry. he obviously felt that guilty he left the pub, I’d have preferred him to have stayed and apologised but I got a sorry all the same. My confidence has never been the same since that day though. It made me very ‘aware’ that I wore a wig and I won’t sit in a pub or restaurant with people behind me. I have to sit with my back to a wall so I can see everyone.
Last week I decided I couldn’t put my blood tests off any longer, they had to be done. I went back on Friday to get my results and seen a lovely female doctor. My blood results came back normal, anyone else would be happy but I was so disappointed. I thought these blood tests were going to answer all my questions. Why did I get Alopecia but all they told me is that I’m healthy. I didn’t wish myself to have something wrong with me, I just wanted something to come back and tell me why this happened to me. The doctor has referred me to a dermatologist (finally) and also put urgency on the referral. So hopefully I won’t wait too long for an appointment, get myself some answers maybe and of course a new wig (courtesy of the NHS bank account of course!!)
Well that’s my story so far……… coming soon – “The Dermatologist” – The Diary of an Alopecian” and thank you for taking the time to read it, if you would like to comment and I would love that, or if you would like me to answer any questions, please go to the forum on this site