I wrote this article 2 years ago ….. It gives people an insight into what it is like to live with Alopecia Universalis on a daily basis. How it can turn your life upside down in an instant. It is an Autoimmune Disease which is so visible that it changes you as a person, how you see yourself, how you feel about yourself, how others see you and how society views bald people. There are many hurdles to overcome when your life is faced with Autoimmune Alopecia. It is not easy…. and you have to change your attitude to be able to live with it comfortably. I wrote this article when I felt acceptance was at the top of my list…… now I just want it fixed. I can live with Alopecia Universalis in my life, at the moment I, and others who suffer it, have no other choice…. but I will never accept this disease until I know it has been researched significantly.
29 yr old Female, Attractive, 5’8”, Enjoys Swimming, Running, Horse
Riding, Outgoing Personality, GSOH, NBM, BALD,
WLTM Genuine Guy.
“You will have to come back to me now, you are bald, no other man will want you!” – Apparently said facetiously.
An ex-lover’s words spoken with such deliberate and almost smug belief, words now etched in my brain with catastrophic psychological
consequences for the questioning, analytical mind of a Gemini. A statement made so flippantly by a supposed loved one that had the
presence and strength in concept to haunt an independent, confident, single female in her late 20s for almost 8 years.
Was he right? Is this condition known as Alopecia Universalis affecting my relationships with men?
We live in a society obsessed by looks. Never has there been an era where more attention has been focused on beautiful women; diets,
celebrities, fashion and we all strive to be a small part of this in our everyday lives. Whether we watch it on TV, read about it in magazines, live it on the weekends or visit the gym daily in order to get the perfect body. We all want to like what we see in the mirror. If we look good this gives us confidence and if we have confidence and look good we attract attention from the opposite sex. This is what it is all about; we are creatures of our planet all participating in our reason for existence, to find a partner and pro create.
Whilst losing my hair at the age of 21 I didn’t dramatise it too much. It was seen as a temporary ¨Blip¨ in my body’s system. Like a cold sore, it looks awful, a sign that the body is run down but in time it will heal and disappear. The thought of losing all of my hair on my head never crossed my mind. The bald patches were treated as a bit of a joke. I took great pleasure in drawing attention to them on nights out. Perfect circular bald patches were left on my scalp, ranging in size from a 20p to a 50p coin, most of them would grow back only for another patch to fall out, how odd! It was an interesting topic of conversation, one that duly took its place in weekend pub banter. 6 Months later and after some research the
depressing reality set in. This condition was suddenly not so quirky. Not only had I lost the hair on my head, I had lost my eyelashes, my eyebrows, and all the hair on my body. I was unrecognisable. Alopecia Universalis had brutally attacked my body, robbed me of my physical identity and left my confidence and self esteem deeply scarred. I went from being content with the way I looked to being repulsed by my reflection in the mirror. An expressionless alien creature stared back at me. The only feminine part left were my breasts and now even they didn’t seem to fit my body. I wanted to hide from the world. Any potential relationships with the opposite sex were now officially null and void.
Coming from a scientific background it was incomprehensible for me that there was no simple cure for Alopecia Universalis. Surely for the body to suddenly stop growing hair “something” is missing, find that “missing something” and the hair will grow again? This concept became my reason for living. My GP referred me to dermatologists and tricologists, I was checked for thyroid disorders, vitamin and mineral deficiencies, had my hormone levels screened but ironically to my disappointment nothing was detected as abnormal. After having steroids injected into my scalp on a regular basis with no dramatic results I had exhausted all western medicine treatments. Frustrated and unconvinced, I put my career path on hold, dropped out of my Physiotherapy degree course in Scotland and moved to Ireland to track down faith healers who had reputations for curing Alopecia Universalis. Potions, lotions, witchcraft, universal energies, drinking water from Knock, frequenting herbalists, homeopaths and Chinese acupuncturists, I would have given my left kidney for my hair to grow back. Thousands of people suffer this condition and no
legitimate cure has been found. The first ever celebrity to be diagnosed with Alopecia Universalis, was Gail Porter. Gail publicised the disorder 5 years after I was diagnosed. She still has Alopecia Universalis. The hair may spontaneously grow back periodically and may fall out again, or it may remain for years but there is no reasoning and no certainty. To base all your hopes on this can prove unproductive in accepting the condition inturn preventing you from learning how to positively live with Alopecia Universalis.
I am 29 years old, I am single and since developing Alopecia Universalis 8 years ago I have had three failed relationships. I don’t believe any of these relationships ended directly because of the Alopecia but the condition is not as insignificant from an outside perspective as one might first think. Do not underestimate the power of hair, not just in superficial vanity but how the impact of losing hair can affect a female on a deeper, psychological level. I know it is only hair, I have the intelligence to rationalise the problem and put it in a perspective box; I have not lost my legs and unable to walk, I am not terminally ill with cancer, this condition is not life threatening, I am a fit and healthy young woman. So why do I let this condition significantly affect the way in which I live my life and the relationships that I choose to have? I wonder is it to do with the society we live in?
In normal everyday life it is not a frequent sight to see a young woman, completely bald walking down the street. Alopecia Universalis is an embarrassing condition, a taboo subject. Men go bald, women don’t go bald. Being bald makes me feel ugly, unsexy, and vulnerable to judging comments. I’m not prepared to step out of my house everyday and be gawped at or whispered about or to see children point and hear them innocently ask, “mummy why does that lady have no hair?” We all want to feel accepted by the society we live in. Who wanted to be that kid at school who didn’t ‘fit’ in? The kid that was a little different who no one wanted to play with in the playground? Conforming to rules and etiquette and blending in is something our society nurtures in to us with positive reinforcement. If you are ’normal’ at school and you look good you are rewarded by being popular by the other kids. Thankfully as we mature we begin to form our own opinions of individuals around us. Unfortunately we will always have this inbuilt knee jerk reaction of having a good old stare when we recognise something out of the ordinary. Had I at the age of 22 years old wanted to be different and stand out from the crowd I could have covered my body from head to toe in tattoos or dyed my hair bright pink or dressed like a Goth and had piercings all over my face. But I didn’t choose to be bald and I can’t change our society’s responses to seeing something a bit different. I don’t want to stick two fingers up to society and Alopecia Universalis and walk about supposedly proud to be bald and ultimately be that unhappy child in the playground. I don’t want to feel vulnerable and freakish, people tapping on the goldfish bowl. I want to ‘fit in’. So every day I draw on my eyebrows and eyeliner, stick on my false eyelashes and wear a wig just so I can look like everyone else.
Growing up I was never aware of my attractiveness, I was a country girl brought up in jeans and T-shirt trying to keep up with my older brother, my mother had to bribe me to wear dresses. Personality, having fun, playing sports and messing around with ponies always came before how I looked. Even at university dressing up was for special occasions, however attracting male attention came easy, wear a smile, laugh a lot, have a care free attitude and people soon wanted to be in your company. I didn’t have a care in the world. Had Alopecia always been part of my life I
possibly could have accepted it easier. I would never have had a comparison of having my own hair and eyebrows and eyelashes. It is all the little things that I used to take for granted which I miss the most. I can no longer leave the house in a hurry, for example when i’m late for work or if i have to quickly nip out to get milk, everything now has to be pre-meditated and planned. Getting caught in the rain doesn’t just have the obvious inconvenience of getting wet and ruining your hairstyle, i have the added concern of my eyebrows running down my face. Silly things like being on holiday, lying next to a pool and not being able to spontaneously jump in. Meeting new people and worrying if they can tell that I am wearing a wig, and that my eyelashes are still in position. Playing team sports, and not having to wonder whether my wig will accidently slip
off and reveal my bald head to an unsuspecting shocked audience. Even going to a spa for a neck and shoulder massage I can’t relax because I dont want to tell the masseuse from the start that im wearing a wig. Riding on the back of my mates motorcycle only to realise I have to confront the dilemma of how to get the helmet off whilst keeping the hair on. The list could just go on and on. People think I put my wig on and the Alopecia disappears, it couldn’t be further from the truth. I end up having to explain my personal condition to a stranger because a situation has dictated it, or I’m conscious talking with a new person incase they can tell i’m wearing a wig, or wondering whether it will come off if its windy! Any person who tells me that I should just not care what people think and insinuates I tear my wig off in public whenever needs be just doesn’t
understand Alopecia Universalis. Being that spontaneous and care free person that I used to be is impossible, if I can’t feel comfortable
with this condition, how on earth can I expect a man to?
Although Alopecia has changed my looks forever I am still the same person inside, hair or no hair. Dealing with this condition has made me a
more understanding and emphatic person, I can see when someone is hurting and can help. I love a laugh and enjoy making people laugh, I still love meeting new people. When I put my wig on and do my make up I can still attract male attention, but in the forefront of my mind I wonder am I portraying a lie? Wearing a wig is a pretence of living my life without this condition. If you think about it I am the perfect example of false advertising. First impressions are imperative and lasting in our society. Couples are initially attracted to what they find pleasing to the eye. I am therefore “not what it says on the tin.” Strip me down to the bare naked truth and this is not what I look like at all. So when do i shatter a potential boyfriend’s illusion that he is dating a natural brunette beauty?
The thought of having to bring up the biggest personal flaw of my life, one which I hide from the rest of the world, with a guy whom I’ve barely known for two minutes standing at a bar is just hideous. What person who has an embarrassing condition even wants to tell a partner of say two months about it? Only until a certain level of trust has been formed between two people can you feel comfortable enough to share such meaningful, personal information. But Alopecia Universalis cannot be hidden for long because of its visual, skin-deep presence. Depending on his attention to detail, if need be, I could possibly hide it up until the first kiss, when there is a chance he could put his hand up to the back of my head and feel that it is a wig. Personally I would rather be upfront and honest from the onset saving any embarrassment of them figuring it out before I had plucked up the courage to tell them. If a man is so shallow that he can’t see past looks for who I actually am then surely he is not worth the price of my last cut and blow dry?
During my 20s I have watched friends relationships blossom, singles love dilemmas unfold, I have witnessed friends settling down, get married,
start a family and I wonder can a young woman with no hair have a normal relationship with a man? In hindsight none of my boyfriends
have ever seemed woried about me being bald on the contrary, a hairless woman can be quite appealing to a man. So what is the problem? The more I analyse past relationships it begins to surface that perhaps it is my insecurities with myself, my thoughts and perspectives on certain situations which unknowingly create barriers within a relationship. I hate what I see when I look in the mirror, I don’t feel sexy when I have no hair on, wearing sexy lingerie doesn’t have the same appeal on a bald woman. I worry that my hair will accidentally get caught during sex and it will come off in the moment. Immediately when I wake up I have to dive into the bathroom to repaint my eyebrows that I rubbed off in the night. Maybe he isn’t thinking these thoughts, maybe he doesn’t see these insecurities as dramatically as I do? Maybe he doesn’t care? But ultimately if I cant accept me and be content with me then how can I expect him to? I was never one of those women who spent hours in the
morning on their hair and make up before they could set foot outside the house. A glamorous, high maintenance girl who if to be stuck on a
desert island the three most important things she must have would be her, mascara, concealer and ghd irons. In some bizarre twist I can’t
help thinking Alopecia Universalis has turned me into that vain person who I never wanted to be. Everything focused on me and my problem, trying to emulate what I once looked like instead of accepting and working with what I have now. In hindsight I have possibly let Alopecia overshadow other important issues within a relationship which in turn end up being neglected to the detriment of the partnership. I have to learn that life is not all about me and my Alopecia.
I have lots of unanswered questions because I haven’t found my Mr Right, maybe I have to tweak the way I see myself. Maybe I have to not think too much, maybe I need to speak up about my condition more freely and not keep it as this whispering secret. I don’t have the answers but I do have a plan for the future. I am going to embrace my 30s, be open with my alopecia, wear a smile, laugh a lot, have a carefree attitude and who knows someone might just want to date a bald girl 😉
Jayne Waddell xx
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