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“I suffer from alopecia but I won't let it define me”

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Alopecia amongst women is rarely spoken about, but an estimated eight million women in the UK suffer from hair loss, and one in eight of those are under the age of 35.

Impossible beauty standards mean that few women are comfortable speaking out about the condition, and even fewer understand that alopecia is a collective term that applies to all forms of hair-loss, from small bald patches, to all bodily hair.

Andrea Mattis, 30, is a personal development and motivational coach, and she has suffered from alopecia for five years. Keen to dispel the myths around the condition and provide support for other women suffering from it, Andrea tells Stylist.co.uk her story:

andrea

I was born with a load of afro hair.

I mean a whole load.

I’ve always loved my hair. I loved that it was thick and healthy; how the way I styled it represented my identity, and how it helps me to think. When I twist its coarse texture between my fingers and feel it roll against my thumb, somehow, my brain kicks into gear.

So when I was diagnosed with alopecia, it felt like a part of my world crumbled.

I felt scared, deeply upset, and my confidence took a hard knock.

It all happened completely out of the blue. One day, aged 19, I noticed the hair around my crown was falling away and that bits were breaking off.

By the time I was 20, my scalp was thinning and large parts of my hair had gone, I had developed a small bald patch and I had to have it all chopped off.

In denial, I spent a long time ignoring it – refusing to accept that there might be an actual problem. Eventually, I had to admit to myself that something wasn’t right, so I headed (alone) to London’s Belgravia Centre.

They diagnosed me with alopecia that same day.

andrea

Andrea and her boyfriend, Daniel

I didn’t process the information well. In all honestly, I was frightened – the idea of being bald was scary - and it didn’t make sense.

Although I’d heard of alopecia, I didn’t know anything about it or anyone that had experienced it, and I didn’t understand why this was happening to me.

The specialists told me that I had a choice of treatments, but they were expensive and I hated the idea of my hair becoming a petri dish for medical trials. Somehow, it felt intrusive and intimate. So, I left it.

It happened at a stage in my life when I wasn’t completely comfortable in my own skin; I was stressed, lacking in self-esteem and then I was told that I was losing what I thought (at the time) was the very core of me.

I felt deeply alone and my confidence plummeted

I felt deeply alone, my confidence plummeted and I started to take comfort in food, leading to substantial weight gain.

For a long time, I kept it a secret. I felt ashamed.

Women are weaned on the idea that in order to be attractive, they should have long, lustrous hair.  Even having short hair is considered blasphemy by some traditionalists. The idea of going bald went against everything that was expected of me as a woman – that I expected of myself. Even though I knew what I was going through was completely out of my control.

I asked my dermatologist if there were support groups but she explained that women don’t really want to talk about these things; that they feel embarrassed. 

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Andrea's hair in 2011 (photograph taken at the Belgravia Centre)

In black communities, especially, hair is imbued with great meaning. The process of weaving and relaxing afro hair is established from childhood. Many women bond with their mothers while they learn how to care for their hair, and visits to the hairdresser can quickly turn into emotional outpourings. 

That’s why it was all the more difficult when doctors told me the reason for my alopecia was my culturally-ingrained beauty routine - relaxing my hair. 

Late last year when the condition flared-up again dermatologists confirmed that my specific form of alopecia is called Central Centrifugal Cicatrical alopecia, or CCCA, a type of hair loss that is most common among black women.

The reason for my alopecia was my culturally ingrained beauty routine - relaxing my hair

Relaxer is a type of strong chemical substance (Sodium Hydroxide) used to straighten tight curls. It’s so strong, in fact, that in 2011, American comedian and director, Chris Rock, made a comedy documentary entitled Good Hair – a look at black women’s relationship with their hair – and at one point in the film, Rock shows how the chemicals in relaxers are so potent that they can completely dissolve a can of Coke.

But afro hair is naturally very dry. It needs to be constantly moisturised and it’s essential to use the right shampoos, conditioners and treatments to ensure it’s properly nourished. In order to ‘tame’ (the derogatory term that describes the controlling of afro hair) the natural curls, many black women turn to weaves, braids or relaxing: it’s a long-standing tradition and a practical requirement.

Chris Rock, Good Hair, 2011

Chris Rock's documentary Good Hair (2011)

I had a weave once in my life and I hated it. The second the stylist had finished, I was counting the hours until I could have it taken out. Number of hours I made it to: 24.

Ever since then, I’ve had my hair relaxed. 

Once you’ve relaxed your hair, straightening it every day keeps it smooth. The combination of these two processes proved fatal. Without even realising, the chemicals had damaged my scalp and I was exacerbating the problem on a daily basis when I took out the straighteners.

Looking back it sounds terrible, but I didn’t have a clue about the dangers.

Relaxing afro hair is weaved into the fabric of our beauty routines within the space of Western culture. Just as we are told that being slim is the body ideal, we are told that straight, sleek hair is preferable.

Looking back, but I didn’t have a clue about the dangers of how I was treating my hair

There are a lot of conversations happening today, with young black women about whether to relax their hair or maintain its natural beauty. Beyonce recently addressed this in her song, Formation, with the line:

“I like my baby hair with baby hair and afros.”

But even whilst hearing the lyrics, we’re reminded how the singer has spent much of her career with blonde, straightened, Caucasian-inspired hair.

beyonce

Beyonce performing at the 2016 Superbowl

So, when I was diagnosed with alopecia the first time I didn’t listen to my doctor – I continued to use relaxers. Because the pressure to fit in and to feel confident overwhelmed the belief that this was causing serious damage.

I felt incredibly trapped: trapped that I couldn’t afford the expensive treatments and trapped that if I didn’t relax my hair I wouldn’t be able to manage it.

I considered biting the bullet and shaving all my hair off completely. But my hairdresser explained that with my type of alopecia caused by scarring, I’d still have shiny spots and it could be even more noticeable.

I had a watershed moment and thought: 'fuck it'

I thought briefly about wearing wigs, but when I went to look at some, I had a watershed moment and thought: ‘Fuck it, I’m not less of a woman because of this, why should I cover it up as if I’m ashamed?’

I decided was not going to let it define me.

Now I’m 30 and five years have passed since my initial diagnosis. I’ve grown thicker skin. I’m happy to tell people about my condition in a way that I would never have dreamed of before. I’ve come to terms with it.

The very thing that scared me about having alopecia (being unable to control it) is the very thing that has helped me get to this point. I have no choice but to simply get on with it.

Andrea and friends

Andrea and friends

I spent a lot of time feeling secretly awful about my situation. On the outside, I’d be bubbly and confident but inside, I wanted to hide from it. It was always on my mind. But while I was completely paranoid about my bad patch, my boyfriend didn’t even bat an eyelid – the paranoia started and ended with me.

Of course I still have moments where I’m on the tube standing in front of someone who’s very tall and I think ‘oh, I hope they can’t see it,’ or I’m at work sitting at my desk and a colleague comes over and I turn to face them to be sure they won’t notice.

I often wonder who has noticed but just hasn’t said anything.

I haven’t relaxed my hair for years now and I’ve learned to appreciate it how it is.

I’m lucky that I still have most of it, so I can slick it back and style it in ways that still feel like me.

 I will have this condition for the rest of my life.

Even with the steroid creams I’m now using, I will have this condition for the rest of my life.

When it comes to having afro hair, I don’t have a problem with relaxers – it’s a process that’s part of our culture and women should make their own decisions. After all, there’s risk with everything in life.

I would like my story to help young black women learn to appreciate their natural beauty. There’s nothing wrong with wanting to change your hair – women of all cultures cut, dye and treat theirs.

But I do think we need to question why we’re doing it: whether it’s for ourselves or to subconsciously appease an ingrained societal value.

Rihanna

Relaxing afro hair gives it a sleek, straight look like Rihanna


The key things to know about alopecia

By Glenn Lyons, Senior Consultant Trichologist and clinic director at Philip Kingsley 

glenn lyons

What is it?

There are two main types of alopecia areata (patchy hair loss), alopecia totalis (whole scalp of hair lost) and alopecia universalis (all hair on the body lost).

Alopecia areata is an autoimmune condition in which the body’s internal messaging goes wrong and the immune system attacks the hair. The follicles then defend themselves by stopping the production of hair cells. 

Causes:

Scientists aren’t unanimous on the causes of the condition, but 90% of the conditions Dr Lyons has seen, have been stress-related. Other people think the thyroid is connected. But most sufferers are completely healthy.

Cures:

In many cases, the condition self-corrects and the hairs grow back spontaneously – but in all cases, the sooner the sufferer takes action, the better.

There are 2/3 treatments people use:

Topical steroid creams – which Dr Lyons does not recommend: “I’ve never seen any improvement whatsoever with topical creams.”

Steroid injections – “Some of these have been known to have results.”

Medical ultraviolet – “We apply this to the bald patch to produce some soreness on the skin, in order to kick the immune system into action which triggers hair growth.”

Bur Dr Lyons prefers to begin his treatments by targeting the stress of his patient, and working on meditation techniques. 

Central Centrifugal Cicatrical alopecia

The form that Andrea suffers from – also known as ‘hot comb alopecia’ or ‘traction alopecia’ is fairly unique to the Afro Caribbean community. It’s not always, but often caused by hot combing or relaxing the hair, which has caused scarring. As it’s a scar that has gone down to the follicle, this form of alopecia is absolutely permanent and treatment is all about preventing the problem from escalating. 

If you suffer from alopecia, contact your GP as soon as possible for support, or get in touch with the Philip Kingsley clinic here.

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