This is always a difficult memory to recall, and not just because it was a difficult time, but probably like many of you, it’s hard to pin point why it happened. It was just very sudden, and as a child really scary to be honest. In fact, now when I see young children going through the same thing, I always think about how brave they are.
‘ looking back you could probably say that stress triggered my alopecia ’
The Beginning of Alopecia
But I also think it has a great deal to do with my immune system too. It was well over ten years ago now; I think I was 11 at the time. My mum and dad were divorced and in the same month they both got re-married. Now I’m making this super clear, because I do not blame my parents divorce for this, not one bit, but the day after my mums wedding was of significance. I was going on holiday with my dad, his partner, and her sons, but strangely rather than the usual excitement that an 11 year old child would have the day before going on holiday, I spent the whole day in tears. I don’t mean just a whimper, I mean hysterical and I didn’t even really know why. I think it was a mixture of emotions to be honest, but this seems to be some kind significant memory before my diagnosis.
On holiday, that’s when it began. I would be brushing my hair and see my hair come out in clumps. At first I thought it was a mixture of sun, heat and the chlorine from the pool damaging my hair, so I began taking precautions wearing a sun hat and avoiding dunking my head under water in the pool (devastating as a child because all you want to do is handstands under water). I remember thinking what is happening to me, what’s wrong with me? I had no idea what was going on, and neither did my dad. Despite this I still had a fantastic holiday, but the worst was yet to come. When I returned home to my mum two weeks later, it was totally shocking and equally devastating for my mum. In fact so much, that it brings me to tears as I write this.
‘ To lose almost every hair on your head within two weeks and have no idea why ’
I can’t even put it in to words how difficult this was for me, as an 11 year old, to understand.
My mum booked an emergency doctors appointment, and dressed in a head scarf we went together. Today, I really appreciate and support the NHS. But that very first appointment is one of the only bad experiences I’ve had with my alopecia, but before telling us what was going on with my hair, the doctor instead rudely said to my mum ‘you do, realise this is for emergencies only?’. Yes, it wasn’t life threatening, but what else are you supposed to do when you have absolutely no idea what’s going on and you’ve never even heard of alopecia before. It was however the same doctor that diagnosed me with Alopecia Areata.
I don’t really remember the next few weeks after it. I just remember having to face going to high school in my second year, absolutely terrified because, I had a pathetic strand of hair in this little ponytail and wore a large hairband to hide what I could. Shortly after this time, I was diagnosed with Type 1 diabetes,
‘ this suggests that it all ties in with my immune system but you never really get definite answers ’
This is probably one of my least positive blogs that I’ve ever written. But it’s the harsh reality of it that having alopecia isn’t and never will be easy. We just learn to live with it. I’ve not cried about my alopecia in a really long time, until now. But I’m grateful that I’ve found the strength to live with it, to learn from it and to hopefully now inspire and support others with my stories. There will always be struggles, but facing this has only made me stronger and now it’s just the norm, it’s part of my life and even if my hair was to miraculously grow back, alopecia would always be a part of my life. It’s helped shape me in to who I am.
Please let me know your thoughts,
lots of love,
Steph
xxx
It is always encouraging to read people’s pain and struggles when faced with Alopecia. I was 3 years old when I lost all my hair, so I can’t recall what caused it or what it feels like to have hair.
What I do remember is being bullied and abused by children all my young life in the most horrible way. I am now 61 and comes from the Caribbean so there was no help whatsoever for me. There was so much suffering for me which affected my whole life which would take forever to write about. I only learn to accept my Alopecia in the last 20 years after I became a Christian. Today I am very happy. I live in Devon and I have 2 wonderful children. Life is for living so I learned to enjoy the hundreds of blessings I have in my life.
Hello everyone,
It’s difficult to try and reply to everyone, but thank you so much for your support and sharing your stories.
Susie – Your 100% right, please never ever forget that you are not alone. I’m so pleased that in some way you can find encouragement and support in my story. Please never feel embarrassed. We are all beautiful.
Janet – I can only Imagine how tough it is for your daughter, you remind me so much of my mum, as she felt so helpless when I was diagnosed and going through school. If she ever wants to talk to someone who has gone through school battling with hair loss, then i’m happy to 🙂
Kath – Thank you so much for your comment. This means everything, to know that my stories are helping others and to call me an inspiration. It’s one of the main reasons I wanted to start blogging with Simply Wigs.
Once again, thank you everyone, lots of love always xxx
I started losing my hair 20 yrs ago ..went to my GP …he sent me for blood tests …blood tests showed I had type 2 diabetes and was rushed inot hospital with very high blood count …been on tablets ever since …but my hair never re grew …so i wear wig …only.problem they easy blow off and it embarrassing ..
I’m on some strong heart medication and I’d read that it can make the hair fall out. I thought it would never happen to me but it has. First of all it was slow all over thinning & now it’s mainly across the top of my head.
I have to wear lots of masking products to try to hide the loss and I know it’s getting to the point where there’s not enough hair to hide the masking products. I feel very ashamed of my hair loss and embarrassed if I wear a wig even in the house. Sometimes I’m so angry I feel that I could just shave what’s left off but I don’t want to feel people’s pity so I’ve just ordered a human hair wig as I have find most synthetic ones too shiny.
Your story has helped me to see I’m not alone in this and that I’ve got to take control of my hair loss rather than let it dictate how I feel. Thankyou from the bottom of my heart for your story,
Could she have her eyebrows tatooed? This can be done really nicely. Mine look great but I am not a teenager and it is hard enough growing up without this.
My sentiments too. Thank you Steph for sharing this and to Kath for her kindness x
I love this blog. It’s nice to hear from others who have struggled and learned to live with this. I lost my hair aged 15 and it was a hard age for it to happen. I have recently, 23 years after losing my hair, lost my eyelashes and am finding this really tough. Anyone who hasn’t experienced it can’t understand how hard it is
Wow Steph, you’ve brought me to tears. My daughter (13) started losing her her in January and by the end of March had nothing left. Unfortunately she then lost her eyebrows & lashes. It has been a real struggle making her believe she is still beautiful and she is battling daily with her wig even now. A new term in school and she seems to have become determined to battle through daily school life (especially after missing so much school previously) and dealing with any looks and comments as she sees fit.
It’s a constant battle for us both as I feel helpless as I can’t physically do anything for her but I know we will get there together and I will tell her about your story and maybe she can read it to see that things do get better and the feelings she has will become easier to deal with.
Hello Steph!
It sounds like you are not only a beautiful person outside but also inside! you are helping so many people, including myself with your thoughts, and words of encouragement. For being so young, you are inspirational and should be very proud of yourself. I know your family must be so proud! Keep up the good work, keep your chin up and I hope you will bounce back very soon,
Love Kath
Hi guys,
I just want to say thank you for all of your lovely comments and support. It’s difficult to reply to everyone individually but it’s so lovely to hear your stories, but also your kind words. It brings me to tears to see how supportive you all are(yes, it seems that I am an emotional wreck at the moment, haha!)
It just shows that the support of everyone around you, really helps you through the hard times.
Lots of love xxx
(((Steph))); to go back to tell the 11 year old you that, ‘this will work out fine and make you a better person’ is what I’d like to do right now. It is a challenge to return to the feelings and confusion you must have felt, so young.
It wasn’t until I was diagnosed with another auto immune disease, Hashimoto’s, that I appreciated that’s why my androgenetic alopecia, diagnosed decades earlier, was likely to have presented.
I won’t go back to dwell on the tears I shed with my hair but I was fortunate in that the loss wasn’t too awful until my darling Mum died and then every day was a nightmare until I caved in and thought I won’t let this beat me and I won’t die of hairloss. Acceptance is a valuable gift and I struggle with it daily – just not with my hair anymore. That box is ticked and I know from earlier posts that you’ve ticked that box, too. We all bear the scars of living – some are hidden, some are not.
Those who might point out our flaws have much larger crosses of their own to bear and deserve nothing but our pity. I’ve only ever had one person ask, ‘Is that a wig?’ My reply, ‘Are your manners appalling?’ had the desired effect. Walk on Steph and thanks for sharing
Great writting think you
I wear à wig it ‘s sometimes difficult to stay like everyone whithout hurts but it’s the part of my life too be strong more than i never know
xxx Diane
You are an amazing woman and an inspiration that you are so open about your struggles. My hair loss is something I still find embarrassing and (although I have had SOOO much wonderful support from people I have told) I don’t find it easy to admit to.
Thank you
Teresa x
Love this blog. . It could have been me writing it. Love to all my alopecia buddies outhe there.xx
We are privileged to call you a friend Steph, and we think you are an amazing & fabulous woman. See you soon. Emma, Stuart & team. xxxx
Hi Steph
My heart goes out to you. My Alopecia started about six years ago, preparing to go to a family funeral, in the bathroom combing my hair when a large clump came out of the front, I just screamed. My husband came running in and I just cried and cried. It went from bad to worse and slowly I lost all my hair. Unless anyone has experienced they will never never understand the devistation for a woman. My doctor was fantastic and my consultant was equally as good. Wearing a wig was a shocker but I came to love my friend, slowly my hair came back but is very very thin and I do find it embarrassing as to me people stare at my head when talking to me! Probably all in the head but I will soon start to wear a wig again to gain my confidence. I can remember a nurse saying to me ‘ for gods sake you are alive and well and have not lost your hair through cancer! If she was trying to be kind it did not work! I know beauty is within and thankfully I have very supportive husband and daughters without which I would not have survived this awful awful illness. My thoughts are with you, god bless and take care. You look simply stunning.
What a brave child you must have been. It sounds horrendous what you went through at age 11. I’m sure stress must play a part but as you say there are no definitive answers given when you lose your hair and this just increased the stress in my case. I also have a low thyroid function which wasn’t defined until I was older and I’m sure there is a link there too.
Many thanks for your words and your bravery.