Living with Alopecia Totalis

Living with Alopecia Totalis

Hey, my name is Poppy, I prefer Pops though. I’m 32 years young and have lived with Alopecia totialis for about 6 years now. So, up until I was 25 years old I had the most beautiful thick curly hair. As per usual though I was never happy with how it looked and was forever changing the style and colour. I used to moan to myself when it was hair wash day because it would take me so long to dry and style it.

I’m extremely sporty and always in the gym so some kind of sweaty up-do has to suffice most days, haha. I stared to notice a really small smooth patch at the nape of my neck. I spoke to my mum and friends and they said not to worry too much it’d go away. I was under quite a lot of stress at the time. I was in a very turbulent relationship and also on a residential course to qualify as a physical education instructor in the prison service. As the weeks passed my hair loss became a lot more noticeable. A lot was coming out in the shower and I now had patches that were impossible to cover up no matter how I styled my hair. I had to start wearing a bandana.

This alone was quite stressful for me as people would look and ask questions. Eventually, my relationship fully broke down and I had to sell my house. The good news is that I passed my course and could return to my established as a fully-fledged PE instructor. However, I’d been away for 13 weeks and my hair was pretty much none existent now! What would my colleagues say, and more daunting for me, what would the Prisoners who I worked with say?

Because my hair was so patchy, thin, and straggly, I decided it would be easier to just shave the rest off. I think deep down I was hoping if I did this it would trigger it to grow back.

As heartbreaking as this was it kind of felt good to take control of the situation. I didn’t have to worry anymore about losing big handfuls because it had gone! My eyelashes and eyebrows quickly followed suit! I was referred to a dermatologist and a group at the hospital who could supply my wigs. But through my research managed to find some amazing shops and people who have helped me massively and still do help me to this day. At first, it was so alien even trying a wig on. I just felt like it was so obvious that it was a wig and nothing looked or felt natural. I didn’t think I’d ever love myself or how I looked again, I was devastated.

I chose a couple of wigs that I felt were the best of a bad bunch I guess. People complimented them and the more I wore them the more comfortable and confident I felt. My friends, family, colleagues, and even the prisoners were all supportive of what I was going through. After a while I got my eyebrows tattooed on and got to grips with eyeliner and false lashes. 6 years down the line I have a number of very different wigs and I love all of them. I’ve also become a lot more comfortable and confident not wearing my wig and have 2 tattoos on my head. It actually works better for me to not have to wash my hair after every sweaty gym session, haha.

Here I am wearing the Tatum in Dark Chocolate

It’s taken a long time but I’ve learned to love myself with or without my wig. Everyone is so supportive of me and always say, we just see you as Pops, it doesn’t matter if you have your hair on or not. They have no idea how much that means to me. So if you are a long time into your hair loss journey or have only just started it, don’t be afraid. You’re beautiful!

Love to you all, Poppy x


Comments

18 thoughts on “Living with Alopecia Totalis

  1. Margaret have you tried different types of cap? Full mono top might help though they are more expensive.

  2. I have Alopecia universalis, so no hair atall anywhere on my body. My hair just started falling out in huge clumps and within 3 weeks i was bald, then all my body hair disappeared. This was just after covid and i still havn’t completly came to terms with it. I am very concious of wearing a wig and never seem to get one that fits , also extremely itchy by evening.

  3. I started alopecia aged 11. It was devastating at that age, but it did grow back in places then go in another. Ironically I was a hairdresser and my sister in law, so always had help on hand.
    By 30 I had lost it all, but luckily not lashes and eyebrows. Wigs back in the 60’s & 70s we’re chronic but still had my skilled help.
    I ve turned 80 now and wigs are quite amazing. Simply wigs have been my go to for a few years now. In fact it’s easier to wear a wig than keep up with styling your natural hair at this age.
    It’s good to have your stylist trim your new wig around your face I find, but other than that it’s a quick was and dry on the wig stand. Thanks Simply wigs

  4. For Bea. Ask yourself if you’d really want to be with someone who reacted that way.My guess is probably not.

  5. You look amazing in the picture. What is the name of the wig you are wearing; it looks so natural.

  6. Hi Pops, you are such a pretty girl, and your hair looks so natural. It does take time to get used to losing our bio hair and having to use ‘replacement hair’, but we get there in the end. Very best wishes.

  7. Wow, I find your journey empowering. I started to lose my hair in my late teens and have worn hair systems for the last six years. I have just taken the next step of having a wig instead, at the not so tender age of 52. For me it is both liberating but psychologically hard. We done – you are an inspiration ??

  8. My lovely you look beautiful ? I think.in the picture your wearing tatum? It looks fantastic and a big thank you for sharing your story xxx

  9. What an inspiring story Pops. We wig wearers are often our own worst enemies when it comes to worrying about how we look. Most people simply don’t notice or if they do they just accept our helper hair as being part of who we are in the same way they accept our glasses or whatever other ‘aids’ we may need to use. You look great in your wig and I’m sure you look amazing without it too.

  10. Awww Pops what a journey you have been through, you look gorgeous by the way much love ??

  11. Hi Pops..Great name BTW..
    What a wonderfully written piece on your condition..how positive and accepting are you? ? you look stunning in this wig
    Colour, style, eyebrows and eyelashes..you look fabulous!
    Very inspirational ?
    Thanks for sharing..
    ?

  12. You look amazing. I have alopecia universalis and started a relationship 5 weeks ago. It was going really well until he found out and then went cool and said everything was great until he found out. Needless to say I’m devastated.

  13. You look Gorgeous honey ! Pretty confident and strong woman ! All the best to everyone!


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