12 Things People Living With Alopecia Want You To Know

It's not just hair.

The word "alopecia" simply means hair loss.

Instagram: @iamgailporter / Via buzzfeed.com

And there are different types of alopecia.

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For this post we spoke to people with alopecia areata to find out what it's really like living with their condition.

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First things first: What is alopecia areata?

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"Alopecia areata is an autoimmune condition – an illness that occurs when the body tissues are attacked by its own immune system. The body’s immune system decides that hair follicles are bad and attacks them, causing the hair to fall out.

"It can occur in just one or two patches or can progress to total loss of hair from the scalp (also known as alopecia totalis) or total loss of hair from the whole body, including eyebrows and eyelashes (also known as alopecia universalis)." – Amy Johnson, Alopecia UK

1. It's not just a physical condition.

Hannah Green

"It's not 'just hair' – it's easy to say, 'It's only hair, you can wear a wig, or wear scarves, and think of all the money you'll save on products,' but NO! I actually liked spending time on my hair." – Hannah Green

"Hair isn’t just hair. Losing my hair was traumatic, it completely changed how I looked and how I felt about myself." – Kate Harrison

"So many people have said to me, 'Oh, it's just hair,' but to me as a young woman it was so much more. At the age of 17 it's all about hair and makeup – it feels like your femininity has been taken away and it's almost as if you've lost your identity." – Lucie Cunningham

2. It can happen really quickly.

Hannah Green

"I was 24 when I was diagnosed and it was quick. I found a bald patch at the back of my head, and within a couple of weeks I had more bald patches than hair. It’s hard to explain what it feels like to be so out of control, but it was terrible. I cried about what had happened, what was happening, and what might happen. The doctors didn’t have answers for my questions and I didn’t know what was going on." – Kate Harrison

"At first I had a little patch in my chin, which I ignored. I had no idea what alopecia was at the time. That little patch started to grow and rapidly spread to my head. That was when I decided to go to the doctor." – David Oliveira

"My hairdresser noticed a small patch on the back of my head. Within four weeks nearly all my hair had fallen out." – Dave Utley

3. It's not a stress condition.

Instagram: @alopeciauk

"A common misconception about alopecia areata is that it’s a ‘stress condition’. It’s an autoimmune condition. Yes, in some people emotional stress can be identified as a trigger to the autoimmune response kicking in. But equally, many cannot identify an episode of emotional stress in the lead up to their alopecia.

"It is not known exactly what activates the autoimmune reaction in alopecia areata but research suggests it is a combination of genetic susceptibility and other triggers such as bacteria, viruses, hormonal imbalances, physical trauma to the body, and emotional stress. For alopecia areata to be labelled a ‘stress condition’ is far too simplistic and to someone with little knowledge of the condition, may lead to the belief that the person with alopecia is somewhat to blame for not coping with stress well." – Amy Johnson, Alopecia UK

4. Alopecia areata is not inherited, but heredity plays a role.

Instagram: @alopeciauk

"Alopecia areata requires a contribution of many genes to be inherited from both parents, as well as a contribution from the individual’s environment. Most children with alopecia areata do not have a parent with the disease, and the vast majority of parents with alopecia areata do not pass it to their children.

"It’s estimated that only in about 20% of cases of alopecia areata does the individual also have a family member with the condition (and this includes wider family members such as grandparents and aunts/uncles). There is no way to tell if you are a carrier of alopecia areata." – Amy Johnson, Alopecia UK

5. Being a man with alopecia doesn't make it easier.

Dave Utley

"Some people think, ‘It’s OK for a man to be bald.' I don’t entirely disagree with this, but I do feel that it wasn’t my choice to be bald and would rather have a full head of hair. I personally feel that it’s a lot easier for women to cover up with wigs, false lashes, and eyebrows etc. For a man to do this, it wouldn’t have quite the same effect." – Dave Utley

6. At the beginning alopecia affects every part of your day, but it gets better.

Instagram: @alopeciauk

"I’ve had alopecia for almost four years now and as time has gone on, the effect it has on my day-to-day life slowly decreases. Initially it was everything – it ruined my self-confidence and controlled where I went, I worried about how I looked, what people thought, what people might say. Today it affects me very differently. On a standard day, there is no difference to my day than your day, other than when you wash and brush your hair, I put mine on, or don’t." – Kate Harrison

"Although alopecia does not control me as much as it used to, every day is different. In the past I was so distraught, especially when I lost my eyelashes, I wasn't able to leave the house. Now I know that I have alopecia – alopecia does not have me." – Lucie Cunningham

7. Having no hair doesn’t mean we have cancer.

Kate Harrison

"I'm not sure a lot of people even know what alopecia is. People see a bald person and automatically assume cancer. I've been asked so many times what stage of my treatment I'm at. Alopecia doesn't enter people's mind." – Hannah Green

"The biggest misconception is that baldness means cancer. There is nothing worse than getting pitiful looks because people have made assumptions." – Lucie Cunningham

"The greatest misconception I have found is that a lot of the time people automatically assume that if you don’t have any hair, you have cancer. I have had people stand up to offer me their seat. I let them know I’m fit and well and that I have alopecia." – Joelle

8. You can be diagnosed at any age.

Joelle

"I was diagnosed four years ago, when I was 22 years old." – David Oliveira

"I lost all of my hair when I was 8 years old. I remember watching my hair swirl down the plughole in shock, not knowing what was happening to me." – Joelle 

"I was about 30 – it started really quick." – David Utley

9. Shaving your hair is a way to gain control.

Lucie Cunningham

"It was horrible, one minute I had a head full of hair, the next, my mum was shaving of the straggly leftovers in a desperate bid for me to cling on to a little bit of control." – Kate Harrison

"Initially, when my hair was falling out in clumps, daily life was extremely traumatic and upsetting. I decided to take back control and shave the rest of my head when too much had come out to cover it. Then life became more bearable, as I didn't have to wake up to hair on my pillow or falling out in the shower. Now I still feel like I've lost a part of me and facing the mirror is still tough but it's definitely easier." – Hannah Green

10. You can lose hair EVERYWHERE!

David Oliveira

"Once I had shaved my head and began to work on accepting that the hair wasn’t growing back any time soon, the hairs on the rest of my body slowly began to fall out. I had about accepted that the worst was over and then my eyelashes slowly disappeared. Everything that defined femininity had gone – I had no hair on my head, no eyebrows, no eyelashes. I felt hideous." – Kate Harrison

11. Making friends with other people who have alopecia really helps.

Kate Harrison

"Ever since becoming part of Alopecia UK, the organisation has helped me realise that there are so many people out there who have gone through some of the same experiences as me and it's an amazing feeling." – Joelle

"The best support that I get is from my friends that I’ve made through Alopecia UK – they understand what it’s like to have alopecia. Being able to discuss something with people that have experienced the same thing will always be a great source of support for me." – Kate Harrison

12. If you choose to cover your head, wigs are great.

Instagram: @missjoelley

"I’ve now embraced my alopecia. I love the fact that I can decide who I want to be – each wig of mine has its own personality and I love it. I remember going to Wimbledon one year and wearing my bright neon-green wig and lots of people came up to me and gave me a high five, and it was awesome. I think that maybe no one knew I had no hair – they thought I had just put on a wig to get into the spirit of the event. That was the first day of my new life with alopecia where I felt normal again and fully accepted by society." – Joelle

Thanks to Alopecia UK for its help with this piece.