‘Are you dying? Do you have cancer?’ I had absolutely nothing left to give. In 2 months, I was completely bald.’: Woman raises alopecia awareness

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“It was all too familiar a scene, lying on the sofa before getting ready for a night out, just to the local pizza place with three friends, having an internal argument with myself. I should wash my hair, but I can’t be bothered, but I really should. Maybe dry shampoo would fix it? This debate in my mind happened weekly. It took too long, I couldn’t style it well, I just wasn’t a very girly girl, but I also don’t want to look like you could fry chips on my head, so the hair wash won this time! However, when quickly blow-drying my hair, I noticed a bald patch. ‘Oh, please no, not this again,’ I thought, as this wasn’t the first time it had happened…

Let me fill you in. Age 16, I was getting ready to go out and I found a bald patch on the top of my head, the size of a large coin. I literally BURST out laughing in the mirror. ‘What on earth is this? It can’t be real, I would have noticed the hair falling out! This is so weird.’ I called my Mam, still nervous, giggling, and explained. She came home from work, called our family hairdresser, and she said, ‘It sounds like alopecia, you should call the doctors.’ We did, and it was a surprisingly smooth ‘treatment’ process for Alopecia Areata (patchy head hair loss). I had corticosteroids injected into my scalp and along the back of the hairline where I hadn’t noticed it was falling out. I never ever saw the back of my head other than when the salon shows you with the mirror and you ‘ooh’ and ‘ahh’ to tell them it looks great. (Who EVER tells them they’ve done a terrible job at this point by the way?!)

Courtesy of Rebecca

The doctor decided it was my body reacting to a period of ill health a year prior. The hair grew back and off I went, living life like it had never happened. 9 years later, aged 25 and another period of hair loss, but this time it was all-round shedding, and everything just looked ‘thin’ rather than a specific area. I was in a toxic relationship at that time and was putting myself through strict dieting so my body was enduring some stress. But as it happens, I ended up leaving the country and starting a new life in Spain as a result of this so the shedding stopped and the hair grew back again once away from the stress I was living through that time.

Courtesy of Rebecca

Now don’t get me wrong, it wasn’t perfect (what is?), but living in Spain was pretty great. I had an abundance of friends, sunshine, beaches, late-night drinks in bars, cozy cooking gatherings on terraces, what’s not to like? Well, upon moving here, I fell for someone, hard, someone I thought would be the love of my life. It was another awful romantic involvement, but the heart sometimes overrules the head. If I could go back and do things differently, I would but without a time machine, that option is just not there. I live with the consequences. We spent 2 precious years together. Me, blissfully ignoring all the warnings from his behavior. My friends and family were all screaming at me this would hurt. It would be my tears shed and him, living a double life. My heart speaks like we were made for each other but it conveniently forgets the emotional turmoil I put myself through. When you receive stress, your body releases the hormone Cortisol and produces what we call the ‘fight or flight’ response, but prolonged cortisol can have damaging effects on our mental health. I lived every day on an emotional roller coaster, fast breathing, racing heart, and that constant feeling in my stomach. You know the one, when someone texts you and says, ‘We have to talk…’ That feeling, every day, for 2 years.

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So one day in 2016, after a week spent together, I just couldn’t take it anymore. I ended it and my heart literally shattered. I felt genuine despair, and lo and behold, 1 month later, we found ourselves staring in the mirror on that pizza night with that same old bald patch. But this time, I cockily thought I knew how to fix it! I had been there before… doctor appointment, quick blood test, injections, regrowth, that’s how the story goes when this happens, right? Not this time. Oh god, if only I had known.

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The hair fell and continued to fall, and it was EVERYWHERE. It looked like a rat in the shower every time I washed. There were hairs on my pillow, in the fridge, and it felt like every time I caught my reflection, I could see more of my scalp. We were getting into the winter season so I could wear my hats/a hat daily. It wasn’t enough though, I still avoided every single remotely shiny surface so I didn’t have to see myself. People were asking me if I had cancer or was dying because that’s what most associate a bald female with. I couldn’t laugh, I was so mentally exhausted I needed a nap at 11 a.m. in the morning. I would burst out crying for no reason whatsoever. It was surreal. I had absolutely nothing left to give. Within 2 months, I was completely bald.

Courtesy of Rebecca

The doctors in Spain diagnosed Alopecia Totalis this time (total head hair loss) and literally pumped me full of drugs, all sorts, and the side effects were endless. I had headaches, weight gain, very low depressive mood phases, and more. I cried one day in a cemetery for 2 and a half hours, I still cannot tell you what about. My hair regrew though, over a period of 6 months, into a wonderful little pixie cut and I was thrilled! As were the doctors who decided to wean me off the medication. Within 2 weeks of stopping all the meds, all my regrown hair had fallen out again. I also noticed I was going longer between leg waxes and hey… were my eyebrows disappearing or am I paranoid? You bet I wasn’t. This time, every single hair on my entire body fell out… eyelashes, brows, nose hairs, leg hairs, armpit hairs. Cue one silky smooth body welcoming the most severe form of hair loss, Alopecia Universalis (Total Body hair loss).

Courtesy of Rebecca

It was SO bizarre. I looked like a store mannequin, I had no defining features and I didn’t recognize myself. There is no way to describe this adequately, I can only say with regret I hated myself and everything about me. Imagine losing everything you thought you knew about yourself, not knowing who this person is staring back at you in the mirror. 29 years of being this laughing, bubbly, confident, and carefree girl just shattered in an instant. I didn’t know what to do, honestly. I know this sounds dramatic when others have it worse but this was so personal. I had never known anything like it. I felt like an alien. One of the worst parts was how unattractive I felt. No feminine clothes or make-up could change my view. How was a man ever going to be attracted to me again when I was repulsed by myself? I will never ever find love. Can you imagine what it’s like to genuinely believe your chance at happiness is over before you’re 30? It was me, only me, alone. Why? Why me? Why was I chosen? What did I do to deserve it?

Nobody could truly understand and while my loved ones tried to sympathize, they could not possibly know what I was going through. People said things they thought would ease the pain like, ‘Oh but you have such a nice shaped head’ or ‘You’re lucky that you have a beautiful face to pull it off.’ Sorry? I’m lucky?! What part of this is lucky? I couldn’t be nasty to people who were trying to help but I felt like screaming at everyone, ‘WHAT DO YOU KNOW?’ There were days I wouldn’t speak to people or would be dressed to go somewhere and cancel at the last minute. It felt like this feeling would never end, life as I knew it was over. I signed up for therapy and went for 3-4 months but it was useless and very expensive. The counselor didn’t know how to deal with this issue and barked up all the wrong trees looking for answers.

Courtesy of Rebecca

I found myself looking online at wigs. WIGS. What was this? Who am I? I never dreamt in a million years I would need a wig but here I was, purchasing one. I found a cheap one to try that was nothing like my biological hair. It came, I put it on. ‘Okay… this isn’t horrific…’ I was more open to the world of wigs. I had an appointment with the local hospital in the North East of England and they told me with the most severe form of hair loss I had, there is little chance of recovery and they do not suspect my hair will ever grow back. I crumbled. With every small silver lining, it felt like there were ten clouds. But this nurse was, in no other words, an ANGEL. She comforted, listened, and informed me of a lady who holds a talking group at the hospital. I contacted her via WhatsApp and here is where I honestly feel my life shifted. I owe my sanity to that dear nurse for this recommendation.

Courtesy of Rebecca

I hated social media at this point, but I was advised to create an Instagram and HOLY SMOKES! There was a whole community to be discovered online. It absolutely blew my mind. According to the National Alopecia Areata Foundation, 147 million people worldwide will be affected by alopecia areata at some point in their lives. That doesn’t include all the other forms of hair loss, so why then, did I think I was all alone in this? Covid struck one month after I created my Instagram and I had 3 months locked down alone in my Spanish apartment. I spent most of my waking hours on Instagram and my world changed. I met new people every single day! Of all ages, in all countries, they gave you tips and tricks, no question was silly, no favor too small. These people became my ROCK, and I don’t know what I would have done without them. Finally, FINALLY, someone who genuinely knew what I was going through.

And you know the most effective thing? I realized I was normal. So many thoughts had run through my head and many of these women voiced they’d had them too, or worse. That made me feel so validated, so ORDINARY, and it was priceless to belong again. I grew in confidence. I explored the world of false eyelashes, eyebrow tattoos, I had my eyebrows microbladed, and oh, how I cried! To look in the mirror and see an ounce of normality on my face.

Courtesy of Rebecca

Covid was some of the toughest months we will ever have in our existence but for me, it granted me the gift of time. To spend each day getting to know so many people like myself and discover there were people right here in Barcelona! I learned how to do make-up and all the things I’d never known before. I remember the first day I did everything ‘right,’ I felt like a QUEEN. I took about 100 selfies, just looking ‘normal’ again, or that’s how it felt. There is no ‘normal’ we all look completely different and unique in our own way, and that’s incredibly beautiful. To know there’s not another like you. Sometimes, I even feel truly attractive again and I never dreamed that would be possible. It’s taken me months to see it that way and some days I still can’t get my head around it. I take so much from that hair loss community every single day I just felt I had to give something back. Return something to the men and women who’ve supported me, listened to me, educated me, and asked for nothing in return.

But what? What could possibly be sufficient? I cannot do make-up or my hair well enough to demonstrate, what can I do? I can listen, and I can help people, and I enjoy doing so/and am good at doing this. I always take the time to thoroughly respond to messages from people asking advice, running their ideas by me, or just wanting to talk. Why not make it my career?! Cue some research and I embarked on what I hope will be a future-changing journey. I enrolled and began to study for a diploma in transformational life coaching. I want to help others who experience the same kind of turmoil. I want to be the reason people don’t have to pay extortionate amounts of money to talk to someone that doesn’t understand or make a difference. I want to be available for people, I want to be able to help those that will inevitably have this in the future.

Courtesy of Rebecca

Why stop at hair loss? Anything that affects your identity or who you were, has people looking at you, or makes you feel different and you want someone to talk to— I want that person to be me. I’m so passionate about perfecting every stage of this, I won’t qualify until I am ready to make a positive difference to anyone’s lives who have been down that track of looking in the mirror and not knowing who is staring back at you.

It is a long road and I am at the beginning of my journey. I’ve had alopecia for 2 and a half years but I now know women who’ve had it spanning across decades. And am I over it? No, absolutely not. I still have bad days where I cry and scream. Truth be told, I am not sure you ever go back to who you were before. You just evolve into someone new. Like with any loss, that dear relationship, and my hair, I think there is a piece of me I’ll never recover, but that’s okay. The void these things leave is a space to be filled with new, better, more exciting things. There are negatives to alopecia, of course, but there are so many positives too. You can change your style, DAILY! Brown and short one day, long and blonde the next. I’m always beach-ready too! It’s brought me into a whole new world I didn’t even realize was waiting for me, and I genuinely feel truly blessed and privileged to have come across some of the strongest humans I’ll ever know.

Courtesy of Rebecca

Don’t get me wrong, there are still many things that make me sad. I struggle when friends complain about their hair when I still wish I could debate with myself whether I wash it or throw it in a bun that day. I get cat-called when I’m dolled up to the nines with makeup and wig but completely ignored when in a headscarf and bare-faced, so I know many men aren’t able to see past the outer packaging. There is a long way for modern beauty standards to go but myself and my warriors are trying to raise awareness daily. We also have things we need you to know. We are not ill, we are not to be stared at, we are just like you, and no lesser, just because we look different. Some of us are happy to be asked questions, but then there are days we cannot face answering them too. We are all handling this in the best way we know how and your support and non-judgment would make this entire experience a whole lot easier.

In the future, who knows? There are numerous new drug trials happening that are having some success rate, but perhaps I will grow to the point I no longer long for the locks I used to have. I also hope to be able to qualify and give back to the great community both present and future. All in all, hair loss and alopecia can happen to ANYONE, at any stage of life. I did nothing wrong. There is no definite cause and no known successful treatment. It really can sneak up on you overnight. So just be kind, you never know what someone is going through.”

Courtesy of Rebecca

This story was submitted to Love What Matters by Rebecca from Barcelona, Spain. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this:

‘My life was out of control. I drank as much as possible to escape. ‘Why is this happening to me?’ I only had half of my hair left, but I couldn’t give up.’: Woman with alopecia takes back her life, ‘I made myself a priority’

‘You look like you’ve got a cancer patient. Who is going to pick YOU?’: Mom adopts daughter with alopecia and baby boy, ‘I’m in awe of my family’

‘I gathered the courage to ask, ‘Would you let me paint your head?’ She’d hidden her baldness under a wig most of her life.’: Artist befriends woman with alopecia to show ‘baldness is beautiful’ 

‘I’ll only play if you take your wig off.’ I was shocked and hurt. I let her bully me in my own house.’: Woman advocates for girls with alopecia, ‘Bald is beautiful’

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