What is alopecia universalis?
This condition is an advanced form of alopecia areata and presents as a complete loss of hair on both the scalp and body. Alopecia universalis is a form of autoimmune disease whereby the body’s immune system attacks hair follicles and leads to hair loss.
What causes alopecia universalis?
Although experts don’t yet know what causes alopecia universalis, there may be a number of risk factors that could increase the likelihood of the condition, including a family history of hair loss or stress. A clear cause is yet to be ascertained through further research, which impacts the avenues for treatment. Some alopecia universalis treatment options include a variety of autoimmune treatments, as well as UV therapy. However, treatments vary between individual cases.
One of our wonderful customers bravely shared her personal experience with alopecia universalis. Mo’s story of hair loss and confidence as she came to terms with alopecia universalis is inspiring and thought-provoking. Keep reading to find out about her journey!
DO You Relate to hair loss?
My name is Mo, and I have alopecia universalis. That means no hair at all, anywhere. It started ten years ago, with a tiny bald patch the size of a five pence piece, discovered while watching the TV one night. As many of you will relate to, it’s been an emotional and pretty intense hair loss journey, which at times has been heartbreaking, but ultimately it’s actually been one of discovery and enrichment. I have much to share about alopecia universalis, losing all my hair and everything that goes with it, too much to include here. But I just wanted to share this one message of positivity that I hope might help others.
In the early days of my hair loss horror, during the rare moments, I felt brave enough to look in the mirror without a wig, I was genuinely sickened by my appearance. It was beyond being appalled, beyond horrified, it was utterly devastating. I was not simply being down on myself either; I honestly saw only a deeply ugly version of me, actually no, not true, I saw an old and ugly version of the vital person I once was. During those dark days, I would feel physical pain when I forced myself to really look. For those of you out there who have lost their eyelashes and eyebrows, I send love and raise a virtual glass to toast your and my survival through that particular minefield. I don’t know about you, but I grieved for every single one of those little hairs. Facial hair softened and feminised my face, so when it went, I felt completely exposed and stripped bare. It aged me ten years overnight. Or so I thought.
So, with this powerful internal dialogue going on, when I went out on the world, I knew that’s what everyone else saw too and no amount of kind words swayed me from that knowledge. But then one day, I had a glorious epiphany. I actually had a moment of wonderful, fabulous clarity that changed the way I thought about my bald-self forever.
It happened in the midst of my very saddest time, the period when I knew that my alopecia universalis could no longer be covered up with a jaunty scarf or a cute hat, and a creeping desperation had kicked in that my hair loss was heading in only one, terrifying direction. I now realise that at that time, I was actually grieving my lost hair, lost youth, lost everything.
I have learnt to embrace the wealth of facets of my personality that make me beautiful and that is what people see and respond to. Although I still have to remind myself virtually every time I face the outside world, it’s so much easier now and I genuinely believe it.
One morning, I was walking from the car park to my office, a familiar journey that always took me past quite a few people also on their way into the building, past reception, past the coffee guy, and every day, there would be lots of “good mornings”, lots of smiles and “how are you’s”.
Anyway, this morning I felt acutely aware that hardly anyone smiled, fewer people said “good morning” and the coffee guy hardly even made eye contact. I got to my office and sat down in a sad heap, saying to myself that this was because of the way I looked. I used to be pretty, with a mane of long, shiny hair that had natural copper tints when the light hit it, thick, dark eyelashes that people used to comment on and strong, naturally arched eyebrows. I knew I was ignored because pretty gets attention and ugly and bald does not. Then, as I hung my coat up, I caught a glimpse of my face reflected in the window and was shocked by my sour expression. I stopped and studied it, and it didn’t look like me. Even without hair, it did not look like me. I had a face like thunder; no wonder no-one was tripping over themselves to interact with me, I could not believe it! So, following my hunch, I scooped up my coffee cup and headed back out there. I took a deep breath, put a skip in my stride and bounded over to the huddle of people buying coffee, smiling. The response from everyone was so powerful; it filled my sad heart right up to bursting.
I forced myself to let go of my self-hate and sadness and found my way back to my happy old self (albeit temporarily), and the response from everyone was as though I had never been away. It was magical – chatting, laughing, warmth, and normality. I started to practice this every day, and I realised that people never see the ugliest, most damaged, most frightened or most sad version of you, they see only what you project. It became a habit that got me through until I started to feel like that for real. Even if people do notice something different about you, the thought will flit on by as they are busy registering the light and love that shines from you, your warmth and your positive energy. And hey, if that isn’t you, then they will notice a whole load of other wonderful things about you; your intelligence, your ability to really listen, the fact that you are always reliable, or really organised, your shining eyes or your smile.
Thank you for your inspiration. I never had a problem until Covid. I started loosing my hair. I just thought it was the stress of it all. Now 15 months later . I have no hair. Just lost my eyebrows as well. Luckily I am in my 70’s so J am older than most. I do wear a wig and trying not to dwell on my loss. I tell people who I want to know. Others I figure don’t need to know. I’m just adjusting to not having to shave my legs or waxing anything. Hair is fixed by just wearing my wig. Just think of all the money saved on shampoo. I’m so glad I didn’t loose it because of cancer.. Be happy that AA is all we have….RLM
Hi Mo
Thankyou so Much for this Article it’s a beautiful philosophy and makes me think that people don’t remember you for your hair only for how you make them feel. I’m going out today ready to give away my smiles 🙂
Another great post Mo and you too Karen. I had intended responding to your previous post Mo, of your very moving story which I had read just before a dental appointment. Whilst at the dentist my usual dental assistant was on furlough and a young replacement was present. When my treatment finished I sat up and heard an audible gasp from the young assistant – I turned around and she stood with her hand over her mouth staring at my wig which was sitting on the top of the dental chair! I relate that to you because it is through posts such as yours, that accurately and honestly share your feelings relating to hair loss and associated losses, that have enabled me to think beyond the immediate. Only a relatively short time ago I would have been devastated by that experience, as it was I laughed and asked for a mirror so that I could put my wig back on correctly!
Keep safe,
Margaret x
Hi, Karen,
My heart goes out to you, please know I’m genuinely sending love and support your way. Yes, losing my long lashes was horrendous too, like watching my feminity fade one lash at a time… I haven’t been brave enough to go for microblading, as I don’t wear makeup I was worried they would look too false. I have considered doing it lately but need to find a place I can trust. I understand that dreadful panic of being discovered too, I have got MUCH better at it lately. I started a new job last year and because it’s an environment that gets very hot I decided to just “come out” from day one because it might have got too hot for a wig and I’d have to resort to the shocking horror or wearing a scarf and showing the world my bald face and hairline. I told my bosses first then answered questions if people asked. It was massively liberating because I no longer feared being found out, I stopped worrying and it was wonderful. No one treated me with pity or like a freaky bald women at all. I got it out there, and pitched it in a way that was not like a victim and people followed my lead and didn’t make too much of a fuss at all. Good luck with deciding your new career, I hope with all my heart that you increase the frequency of those good days and find a way to make peace with your AU.
Much love,
Mo xxxx
Hi Karen
So glad to hear you are starting to cope better. It does get easier. I thought about micro blading but am a bit of coward so I am going to try the ‘Nicole eyebrows from Simply Wigs. Hope things start to feel better for you soon xx
Mo
Hi Mo,
I can so relate to your story , thank you for sharing …..I have UT for coming on 3 years now and still finding it hard to cope with ………I think the worse part was losing my beautiful long eyelashes ……..before I got my eyebrows mircoblading I was so stressed in work as panicking @ meeting that my eyebrows I drew would wipe off & that everyone in the room was staring @ me. I have since finished working & taking time out to figure out my next career move and come to accept my UT condition …..I have good & bad days and happy to say recently more good than bad ……Karen xx
Hi Mo
It was great to read your story and also to realise that so many people feel the same way as I do. I look at photographs of my beautiful shiny hair that has now mostly gone but now realise I am certainly not on my own. I am not sure about AU as I was diagnosed as having Graham Little syndrome which is an immune problem. I too started off with an alopecia patch, loss of eyebrows and body hair but have retained some eyelashes and still have quite a fair bit of hair at the back. The front, however, has gone for ever. I do not like to look in mirror when the wig comes off but have now accepted it is what it is and only people close to me know I wear a wig and I have the added blessing of being told ” how do you do it, your hair always looks so nice” Thank you again for sharing x
Hi Mo – your story is inspiring – very like my own tale- I was 18 when I lost all my hair and am now 59 so a long time and a lot of wigs since then – they are so much better now – I just use eye liner and draw in my eyebrows to help things along – I have accepted that it is very unlikely that my hair will grow back now but it doesn’t define me anymore but I took your attitude and pasted the smile on and got on with it – thank you for sharing your story for all us AU people xxx
Wow, I’m so moved and inspired by everyone who replied to my post. So much strength and wisdom borne from loss and sadness. I’m SO proud of all of you (us). So much love and support too, what fabulous people you are. Look after yourselves, it is heart warming to know that we are not alone in the world of hair loss. Thank you, Mo xxxx
Wow, I’m so moved and inspired by everyone who replied to my post. So much strength and wisdom borne from loss and sadness. I’m SO proud of all of you (us). So much love and support too, what fabulous people you are ?? Look after yourselves, it is heart warming to know that we are not alone in the world of hair loss. Thank you, Mo xxxx
Omg, I too remember the awful wigs of 48years ago, i even had a handmade real hair one made, so dreadful i cried ,and yes i think i would rather have eyebrows and eyelashes grow back than my hair,
Dear Mo, thank you for sharing and for your courage and insight.
I absolutely relate to all that you have said. I was 28 when I started loosing all my hair but it was the realisation that I was loosing my eyelashes and eyebrows too that almost left me broken. During my darkest times it was only the certainty that my daughters were better with a bald mother than with no mother that kept me going. I decided that since there was nothing I could do about it I just had to get on with it. I put on the wig painted on a face and carried on with my life. I eventually accepted that the major change was how I felt about myself and not how others felt about me. I am now 69 and still doing the same. Over the years I have had so much cause to be glad of the life I have and so grateful for the fabulous wigs now available. The horrendous N.H.S. versions of 40 years ago being, happily, a distant memory
Hi Mo,
Thank you for sharing your story! I’ve had AU for 6 years now and honestly sometimes I feel like I’m staring at an alien without all of my “battle armor” on (that’s what I call my wig, my Dimples eyebrows and my MoxieLashes). I still struggle heavily with how I look without hair, I’m still trying to get to my epiphany on my situation. I see a small pinprick of light though. Because of a particular medication I have had to begin taking (for another unrelated condition), I’ve had minuscule hair growth on the top of my head. I don’t know how long it will stay, how long it will grow, or if it will grow anywhere else, but it’s a start!
I also have alopecia universalis and have done for 10 years now . I lost my hair the first time at the age of 13 and it did grow back again , but took a year . I always had this feeling it would fall out again and it did , this time it didn’t grow back. I have come to terms with it as there is always someone worse off and as a nurse, I see this all the time .
I have used my experience to help patients with hair loss . I’ve had lots of nice comments about my wigs and don’t miss having to colour my hair. I was beginning to react to the hair dyes so it’s a relief not too have to worry about that ! All the best to all you brave ladies xxx
Hi Mo
Well done love. Keep that Positivity going ?.
I lost all my hair, eyelashes and eyebrows after my Dad died when I was 12. I didn’t go to school anymore because of it, felt like I was going mad . I started wearing a wig but very self conscious.
I went on to have relationships as I grew up but always had low self esteem.
It was only after I had my Son when I was 30 that I started working on Positivity and building up my confidence. I did the same as you and started acting confident… Then it became a habit…. I am now 65… very confident, Love myself the way I am… and buy a new wig every couple of months, see it to fit me and cut it to how I want it…. I have become a fan hand at it. I practice Mindfulness and anything positive I can.
Warm hugs to you Mo and stay happy ?
Hi Mo,
I’m sending my love, and raising that glass right back at you. Thanks for sharing (some) of your story.
Annie
This all resonates with me. Alopecia since the age of 13. Universalis for 35 years. The worst part was losing eyelashes. But this is me. I can’t change things. So live life to the full. The people that matter love you with or without hair.
This reminds me so much of the beginning of my journey 15 years ago. Alopecia has made me aware that other people also have hidden disabilities too. We are all beautiful
Best wishes Mo xx
Wow, very powerful, I too have had total hair loss for 45 years since I was 13,it was the worst time of my life, I was bullied at school, struggled when meeting new people and socialising, all I used to tell myself when I was feeling low was that it was not life threatening and the old adage millions were worse off, and yes I believe it made me find my inner strength too.
Yes, I have been exactly where you have been Mo, we must keep smiling!?
Dear Mo, Thank you seems inadequate for such a really fabulous and so very accurate summation of your own experience of hair loss. I have seldom read anything that goes anywhere close to the multiplicity of emotions that are experienced, as does your ‘Whisper’. Reading your account made me straighten my shoulders, put a smile on my face and welcome the day! Thank you.
Margaret
Mo, I really relate to your story. Only ot has taken me 20 years to get to that conclusion. Thanks for verbalising everything I have been feeling.