At 14 years old Julie Williams was diagnosed with Alopecia Areata.
When I met Julie last year I was struck by her positive upbeat attitude and endless energy for campaigning and raising awareness of Alopecia.
Julie is mum to two beautiful children, wife, compliance manager, volunteer with Alopecia UK and Changing Faces. Julie writes a blog about alopecia, autism, parenting and life in general.
What Is Alopecia?
Alopecia is a general term for hair loss affecting any part of the hair or body. There are different types of alopecia ranging from small patches of hair loss (Alopecia Areata) to total loss of all body hair (Alopecia Totalis).
Alopecia can affect the hair on your head, eyelashes, eyebrows, beard and body hair.
What Causes Alopecia?
Alopecia Areata is an autoimmune disorder, where your body sees certain hair cells as foreign enemies and attacks them. It’s not fully understood why this happens or why localised areas are affected. Nor it is understood why hair regrows again.
If you have Alopecia Areata you may be more likely to develop other autoimmune conditions. Such as thyroid disease, diabetes, vitiligo for example. But it is not always the case.
Alopecia can affect children, women and men of any age. It is not catching nor is it related to diet or nutritional deficiencies. Very stressful events such as bereavement or separation may trigger alopecia.
Is It Possible To Make A Full Recovery?
There are treatment options for alopecia which have varying degrees of success for different people. Treatments such as steroid creams, steroid injections or light therapy may be offered to patients through their dermatologist.
Alopecia sometimes comes and goes. Alopecia Areata for example, may vary in how many patches of hair are not growing at any one time. It also varies where on the body those patches are. For some people, alopecia is permanent, whereas others may only experience it for a short period of time.
There is a genetic predisposition to alopecia, although it is more common in people with other autoimmune conditions. However, there is no evidence to suggest it is passed down generationally.
Were You Bullied About Your Alopecia?
I probably was bullied to some degree. I tend to block out bad experiences and laugh them off so it’s hard for me to recall the detail. Certainly I received more attention than I would have liked as a teenager trying to blend in.
I think for the most part, there was very little awareness of alopecia at the time. Other children were curious and concerned. They wanted to know if they could catch it, if my wig would come off unexpectedly, that sort of thing. I don’t remember anyone being actively mean to me and I do remember some people being exceptionally kind. I think it’s tough for everyone when you don’t understand why something has happened.
What Was The Emotional Impact When You Were Diagnosed?
It was very upsetting:
- I didn’t understand it.
- Nor did I know anyone else who had experienced it.
- It was scary because I didn’t know what to do about it.
I felt terrified at the prospect of going to school as I was losing my hair. When I started to wear a wig. I think it really shook my sense of self. It took me a long time to be properly comfortable with myself after losing my hair – almost twenty years. Looking back now, I see how much it has affected my self esteem and self worth over the years.
How Did You Deal With The Emotional Impact?
My parents were incredible, they listened, supported me, got me some great wigs. It was very hard for them too to see their little girl lose her hair. As a parent myself now, I think it must have been as hard for them as for me. Some of my friends were absolutely wonderful. They very much had my back at school which made a huge difference.
One of the most helpful experiences I had was meeting the lady I got my wigs from. Due to the nature of her job, she had met many people with alopecia. When I was in her shop I remember not feeling so alone.
I have been dealing with Alopecia Areata for most of my life and by far the biggest support has been the charity Alopecia UK. I only found the charity a couple of years ago and my acceptance of alopecia has changed significantly since then. It has been incredible to meet so many other people who look like I do and have been through similar experiences.
Did You Get Professional Support?
Not a great deal, I was sent to a dermatologist when I was first diagnosed and tried a cream for a while but when that didn’t work. The only option at the time for Alopecia Areata was steroid injections. I don’t like needles and the the thought of having them in my head was terrifying!
Alopecia UK are doing great work trying to raise awareness of alopecia with GPs. They are working to ensure GPs receive training on the condition. I sincerely hope that makes diagnosis easier for people in the future.
Has Your Alopecia Impacted How You Feel About Yourself?
I’m sad to say that it has had a very negative impact on how I feel about myself for most of my life. It absolutely crushed my self esteem. It has always been there, distracting me, I’ve spent so much time hiding bald patches in my hair, worrying that people will notice I’m wearing a wig, worrying that the wind will blow – the list goes on.
I’m happy to say that things have changed for me though, since setting up an Alopecia UK support group in North Herts and meeting many inspiring people with alopecia both through that and the wider social network. I am very much embracing my alopecia.
I can’t say that I am always happy with the way I look, the patchy headed look takes some adjusting to! But I like the freedom I have given myself in terms of choice in recent years. From my collection of seven wigs and a number of scarves / buffs / hats I can choose how I want to look every day. I can decide whether to put my patchy head on show to the world, or rock up with a perfect wig, or with a nice warm hat.
I like that it is now on my terms and I am in control. Alopecia has become a part of my identity and has led to meeting some wonderful people. I have some amazing experiences that I doubt I would have had if I hadn’t had Alopecia nor embraced it as part of myself.
How Do You Feel About Wigs?
It very much depends on the mood I am in!
I find them reasonably comfortable most of the time. I’ve always found it better to try them on and see what feels right on me.
I also think it helps to get them cut to suit my face – I really need a fringe and I am lucky to have a wonderful hairdresser friend who will happily cut my wigs to suit me.
They can get hot in summer, or just a little annoying by the end of the day. I often whip mine off when I get through the door at the end of the day. But I only liken that to friends who can’t wait to take off their make up or bra once they’re home!
I feel fortunate that I’ve got to a place now where I know I can choose my look each day, if I don’t want to wear a wig then I don’t.
Are Your Wigs An Extension Of Your Personal Style?
When I was a terrified teenager, I just wanted hair that would make me blend in – as much like my natural hair as possible.
When I was in my late teens, I was much more experimental and had some very fun hair.
Now I’m in my thirties, I have a number of styles and colours and I choose what I’m in the mood for and what goes with my outfit. I mostly wear synthetic wigs which require no styling so my perfect hair takes seconds, I love that.
How Do You Feel About Not Wearing A Wig?
I am very comfortable with it now but I wasn’t always.
When I lost enough hair to have to shave it again in my thirties, I didn’t wear wigs for the first year or so as my daughter was still a baby and I worried she might just pull it off when I was carrying her!
I wore scarves for a while but eventually I got comfortable with getting my patchy head out for all to see and I have only had positive experiences with people asking about it (or not asking about it).
I’m glad to have had a lot of positive experiences with children at my kids school and in the wider community about it too, it’s great that they will grow up knowing about alopecia and it won’t be unusual to them if they know someone who develops it. Awareness really does make all the difference.
What Reaction Do You Get If You Don’t Wear A Wig?
Honestly, people are kind and considerate on the whole.
I rarely get questions from strangers and when I do, I try to remember that they are just curious.
The hardest thing for me is when people assume I have cancer and I always find it awkward to have to correct them.
I also suspect that the more confident I have become in myself, the less I notice the reactions of others. I think I used to look for it, and see the worst, whereas now I am usually too busy with my children / work / life to pay much attention to what anyone else is doing! I’m pretty sure they are too busy to pay much attention to me either!
What Has Been The Most Challenging Aspect Of Your Alopecia?
My self esteem has been very hard to rebuild over the years. This has been my greatest long term challenge.
There are some things that have surprised me too such as the impact of losing eyebrows and eyelashes. I really lost definition in my face without eyebrows (mine are now microbladed). Without the protection of eyelashes I get things in my eye more than other people. They also seem to dry out more. Don’t even get me started on a lack of nose hair in hayfever season!
What Is Your Advice To Anyone Diagnosed With Alopecia?
Push hard with your GP and dermatologist to get the treatment and support that is right for you. And don’t give up pushing for it.
Take a look at Alopecia UK and find a way to connect with other people who have alopecia. You can do this either online or by joining a local group. The knowledge and experience from people who have alopecia and have been though similar experiences before you is invaluable.
Please Tell Us About Alopecia UK
Alopecia UK is a small charity in the UK which aims to raise awareness, provide support and encourage research into alopecia.
There are local volunteer led support groups (for adults and children) across the UK, online support, annual conferences and trips, lots of helpful videos and factsheets, suppliers directories, and they help to fund research into alopecia – and a lot more besides!
How can people help Alopecia UK?
Take a look at alopecia.org.uk and follow Alopecia UK on Facebook, Instagram or twitter. Like and share their campaigns – it’s the quickest and easiest way to raise awareness of the condition.
They are a very small charity and any fundraising / donations are always very gratefully received – more details on the website of how you can help in this way.
Like to read Julie’s blog then check it out here
Would You Like To Improve Your Body Confidence?
If you are suffering from low self-esteem or would like to improve your self-worth why not check out my tips to improve your body confidence today.