Alopecia is my companion, not my enemy

Alopecia is my companion, not my enemy

IT doesn’t define me, but makes me who I am.

[ I AM JANE – this is my story ]

Hi everyone, my name is Jane, I’m 57 years young and I have had my Alopecia companion for almost 46 years. I call it my ‘companion’ as it has constantly been with me since the age of 21 and prior to this was a regular visitor.


Anyway, like many others who have told their journeys, mine is similar with a few hairy (excuse the pun) incidents along the way.

At aged 18, I had a comb over. Not very stylish but a necessity as wearing a wig at that time was not something I wanted to consider. Wigs in the olden days (sound like my nan), were obtained from places that sold jokes, costumes or were displayed in the front window of a hairdressers.

At 21 however, the game was up. The years of taking supplements, lotions, potions, having ultraviolet light treatment and taking part in a trial for the treatment of the condition, had made no difference and I either had to accept being bald or get a wig.


Now, whilst I am a confident 57-year-old woman. Back then, both these options filled me with fear.


It was difficult to know where best to go, how was I to pay for it? Would it change me as a person? What choices did I have? The ‘tinternet’ (Peter Kay speak) was nowhere as good as it is today and society was far less accepting of ‘difference‘. Even guys didn’t want to accept baldness.

Anyway my first wig shop visit wasn’t great. Choices were King Charles Spaniel or Vera Duckworth. My mum said I looked a ‘bugger’ in both so we left. A few weeks later, selecting from a list given to me by the hospital Appliance Officer, we ended up in a stockists in Manchester. I managed to get fixed up from there but can’t say I was enthusiastic with the choice. Over the years I have had many different styles, sizes, colours and lengths. Some, I have loved and others not so.

I have had a number of incidents over the years where I have accidentally lost my wig when out.

Through bad weather and playing sports, it once was knocked off my head! (On one occasion it was blown into the road and the car driver swerved thinking it must have been a cat). I just had to laugh that time.


It hasn’t always been smooth going though and it’s only the years and experiences I have had that make me who I am today.


I chose a long time ago to ‘own’ my Alopecia Universalis and those that have accepted me the way I am have come on my journey with me. Those that didn’t, I chose to leave behind. This is the message I have given to my 21 year old daughter who has recently started her own journey and acquired her own Alopecia companion.

Having come across Simply Wigs in recent years, I have now extended my wig and headwear collection. I am comfortable in wearing a turban (my husband calls it my ‘turbut’) around the house and on holiday if it’s hot and a wig in public. I choose not to go ‘combat’ outside at present but this may change in the coming years as I recently removed my wig on a flight due to having a hot sweat (I am a woman of a certain age now) and to my surprise no one seemed to care that I was bald.

Social media and society is much more open and accepting of differences these days, even to the point of promoting them.

At present science has no cure for Alopecia and doesn’t fully understand the cause, apart from it being autoimmune. So, I tell my daughter we are pioneers in evolution as one day everyone may be hairless’

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Comments

6 thoughts on “Alopecia is my companion, not my enemy

  1. Hi Veronica,
    you are going through a very tough time and our bodies react in different ways. I started losing my hair after going through a long protracted time of stress. They often say it is not stress related but I find that hard to believe. Your problem might recover if things get easier but there are lots of us who have had to deal with a permanent loss. Just reading these messages shows there are ways through it and I hope you find the right support to deal with everything that is happening. My best wishes for you xx

  2. I don’t really know what to do. I am 74 , not daft or anything so far, but my husband is pretty Ill with bladder cancer, just lost my brother. Always been a bit anxious about stuff, but my hair is disappearing in patches, and I am upset.
    Does anxiety contribute?
    All answers much appreciated.
    Veronica xx

  3. I so love reading people’s articles and puts a big smile on my face. I lost my hair at the age of 21 and still no sign turning 50 just last week! – I do have hairs on my knuckles and toes though ? There is no doubt loosing your hair is very upsetting but often I think how lucky we are to others. Please keep the stories coming, it makes me feel so much better and I love reading them! My wig once flew off on the bumper cars and I was devastated at the time but can see the funny side now.

  4. Thank you for your ‘story’ , Jane. It made me laugh and that is remarkable because on the whole I haven’t found my journey with alopecia, one to laugh about. It attacks all our vulnerable places. You brave women and men too, who have shared your stories, fill me with confidence and hope that there are ways of coping with it and triumphing too. Thank you again.

  5. Hi Jane
    At 57 myself I appreciated being able to read your story and I certainly empathise with the hot flushes! Great to have a chuckle at the car thinking it might be a cat when your wig blew off. I’ve lost mine a couple of times, the funniest when I was clearing some brambles and they took my wig with them when thrown onto a heap! But, I am the type to be mortified if this happens in public and that’s my big challenge, to learn to find it funny or unremarkable if it does. I’ve let these fears dictate my life for over 25 years of wearing wigs and that’s really not good. Fab what you did in the plane and I’m sure I’m going to get there too. I hope your daughter has your confidence to embrace her ‘companion’ and that bald is acceptable to everyone if it is to ourselves xx

  6. That article really resonated with me. To be honest you do get to the stage of hey this is me and now i actually embrace being different. Life is so much better with the choice we have now. My first wig was like a hamster on my head. I was so embarassed i just went into a shopping centre inbelfast and bought the first one i saw with little advice or empathy. That was 20 years ago. I think we are a fabulous group of women with super strength to overcome this taboo. Xx


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