Lessons Learned from Experiences with Alopecia

Lessons Learned from Experiences with Alopecia

We have had many lovely customers write into We, That Wear Wigs to share their experiences of alopecia, and it’s amazing to see the support and love that is woven into the fabric of the Simply Wigs community.

With that in mind, we’ve put together this post to bring together a few helpful lessons to keep in mind if you have alopecia.

You might not recognise yourself sometimes

One thing people often comment on is how different they look with hair loss, whether that’s when your hair looks thin or patchy, or if you decide to shave it off. A recurring theme in our stories is people who look in the mirror and feel like they see someone who isn’t feminine, or who feels ugly.

Our beautiful customer Mo said she ‘honestly saw only a deeply ugly version of me, actually no, not true, I saw an old and ugly version of the vital person I once was. During those dark days, I would feel physical pain when I forced myself to really look.’

However, it’s key to remember that people will see what you project, and that is much more powerful than any loss of hair. One morning, feeling this way and upset that fewer people than usual had said smiled or said good morning, she realised something.

“As I hung my coat up, I caught a glimpse of my face reflected in the window and was shocked by my sour expression. I stopped and studied it, and it didn’t look like me. Even without hair, it did not look like me. I had a face like thunder; no wonder no-one was tripping over themselves to interact with me, I could not believe it!”

Strong Mo put a smile on her face and went back out, and ‘the response from everyone was so powerful; it filled my sad heart right up to bursting’.

Read the rest of Mo’s uplifting story

Give yourself room to grieve your hair

When you lose your hair, some people might not understand that there is very often a grieving process involved. This is not only common but completely normal! Our hair is often a part of our identity, for personal reasons as well as spiritual or cultural reasons. As a result, losing it can feel like losing part of yourself.

Even if you weren’t a fan of your natural hair’s style (as so many people aren’t!), the loss can still be jarring. When Samantha lost her hair, it had a very emotional effect on her.

I long for my own hair, limp as it was. And like any grief,  it can grab you suddenly and relentlessly making you miss one of the things that made you, you.’

And of course, the grieving process is not about being ‘done’ with grieving, as much as it is learning to live with the loss. Samantha adds that ‘if I could have my own hair back again, I would in a heartbeat’, but chooses to wear wigs to help herself feel better.

Learn more about Samantha’s journey with alopecia Universalis.

Hair loss can occur at any time

Hair loss, particularly among women, is not a topic commonly discussed, and so many women don’t really realise that hair loss doesn’t only happen to older men! But anyone can experience alopecia or hair loss at any point in their lives, whether due to stress, mental health struggles, pregnancy, hormones, lack of adequate nutrition or just genetics.

Lizzie lost her hair at six and considers herself lucky. ‘I don’t really remember what it was like to have hair. I imagine it’s a lot harder to lose your hair as a teenager or an adult’. She also believes that having alopecia has helped her develop her resilience and positive attitude, which has helped throughout her life.

When Kirsty started noticing her hair falling out, she was 18 and in her first term of university. Although she, too, found her hair loss incredibly difficult, she has some wise words to share. ‘Aged 20; it’s very, very difficult to come to terms with losing your hair. It isn’t easy at 30. At 40. At 80. There’s never a good time in one’s life to lose hair.’ Now, she is a support group leader for Alopecia UK, and says, “Some of the most inspiring women I have met are those running alopecia support groups and alopecia accounts on Instagram. They are strong, they are kind, and they are beautiful. I am proud to be a part of their community!”

Check out Lizzie’s blog on what helped her cope as a child with hair loss
Read about how hair loss has affected Kirsty.

Deciding how you want to handle your hair loss is not only deeply personal but also a series of decisions. Should you shave your head, should you wear wigs, should you get eyebrows tattooed on or use make-up… The options sometimes feel endless, and an important one is deciding who you want to tell.

You can choose who to tell

There’s no right or wrong decision here!

You might tell absolutely nobody, or just a few close friends and family. You might only bring it up if asked, or you might be willing to talk about it any time. However, there are three important things to keep in mind.

  • It’s best to make your intentions clear. For example, if you tell one friend but don’t want another to know, ask them to be discreet or keep it to themselves. This way you avoid someone hearing anything ‘through the grapevine’ or someone asking you about it when you don’t want to discuss it.
  • Nobody needs to know unless you want them to. It’s your business and your body, and you don’t owe anybody information about it.
  • You might change your mind about who you would like to know over time – and that’s okay!

Although Denise struggled with her hair loss at a young age, she finds herself a lot more relaxed about it now’, saying she has ‘no problems with telling people I wear a wig as I love to see their reaction when I tell them’.

Check out Denise’s experience of alopecia.

There might always be bad days, but there are so many good days!

Many people that we talk to admit that they still have bad days with their hair. That might be days where they feel sad, feel like they’re not feminine or attractive, or just not feel confident in their own skin.

We wish we could say that once you come to terms with your alopecia, that you’ll only ever feel confident again. Unfortunately, that’s not usually the way, and many people have days where they feel down. However, as you find coping mechanisms and a strong support structure, not only will those days be fewer and further between, but you’ll be in a much better position to handle them. And what’s more, the good days will be incredible!

Our customer Maggie hasn’t let her alopecia stop her from living her best life and, earlier this year, she took an active holiday in Lapland, going snowmobiling, husky sledging, snowshoe trekking, on late-night aurora camps and visiting a reindeer farm, all in wigs!

Although she was nervous at first, she said, ‘It was the most magical holiday, and I hardly needed to give a thought to my hair/wig issues after that first day.

‘I would have missed out on so much if I’d given in to my anxiety. On reflection now, I doubt whether anyone would have given much thought to it anyway; I am not, it turns out, the centre of the universe!’

Congratulations Maggie – we hope your next holiday is just as exciting!

Read about Maggie’s amazing holiday and see an adorable husky puppy!

One idea is to put together a to-do list of all the things you don’t feel confident doing at the start of your alopecia journey. Then, over time and as you feel more confident, dare yourself to tick them off.

Some ideas might include:

  • Swim in public, or go to a beach.
  • Go on a windy hike in a wig (make sure you bring good wig tape).
  • If you have no hair or if you shave your head, paint your scalp – our customer Helen had a poppy painted on her head for charity!
  • Get professional photographs taken, with or without your wig.
  • Go natural for a while, even if it’s just while you’re sitting at home in the evening – this can help you get used to it in a comfortable environment, without fear of judgement.

So, there are some of the things we’ve learned about the alopecia experience from our customers’ stories. Everyone is on a unique journey and every person is incredible!

This year, the theme of Alopecia Awareness Month is ‘Alopecia; My Way’ and it’s all about sharing your alopecia story. If you would like to send in your story to our wonderful, supportive community, you can do that with our submission form! Alternatively, browse our amazing selection of synthetic and human hair wigs.


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