Living with Alopecia Areata – My first 2 months

SP continues her Living with Alopecia Areata blog 2 months on and its great to see her looking so relaxed and hear all that she is doing – life is busy!

Living with Alopecia Areata – keep a journal

‘It’s a shame I didn’t think to take more photos over the past couple of months, because it would have been nice to capture what your headwear has enabled me to do, which is essentially to carry on my life with hair loss. As you can see from the pictures attached I’ve tried out all ‘looks’, even days where I wanted to feel like I still had hair, I’ve tied a scarf to create the feeling of having a ponytail or plait. (My hair was shoulder length.)

Whenever people have asked me where I got my hats or scarves from, they are often surprised that in the first instance I made a 5 hr round trip to Surrey to see you in person. While I appreciate that it might seem a bit odd, or extreme, it really did make a huge difference to me to be able to speak to you and Diana in person. To be able to have someone measure your head properly, to show you different styles of headwear, and to give you a lesson on how to tie a headscarf, was so helpful.

When you find yourself on unchartered territory, to be able to speak to someone who understands and has an insight is so important. It’s reassuring, but also empowering which is what you need.

Living with Alopecia – ‘there was no reason for me not to be out doing’

Up until this year, my only experience of hairloss was looking after patients who have, or still are going through chemotherapy. I had very little knowledge of Alopecia and in fact until a couple of weeks ago I had never met anyone with Alopecia before.

To all intents and purposes I wasn’t ill, I was just losing my hair. Because I wasn’t ill, I didn’t need to have time off to have treatment or attend appointments. I was still well enough to continue with daily life as wife and mum. There was no reason for me not to be out doing the Tesco shop, or the school run!

There was no reason why I couldn’t go to my daughter’s dance show, or to cheer my youngest son on at his cross country competition along with about a dozen other mums. There was no reason for me not to continue to work, to see the patients on my existing caseload, and to meet new patients and their families.

I was already committed to speaking at a conference, I’m teaching later this month and I had been tasked with taking our new CEO out on a home visit, so she could observe and gain insight into the work we do. All of this I’ve had to do while trying to manage my hair loss! (To hear more of SP’s Living with Alopecia at Work experiences click.)

It’s important to know living with Alopecia you can adapt

I very much still needed to be me, I’m a very feminine person, I’m usually quiet and unassuming. I’ve never done extremes of anything. I’ve had the same hairstyle all my life with the occasional subtle variation. I dress fairly conservatively, I wear makeup but again it’s always been subtle. So at the risk of sounding dramatic, when I started to loose my hair and I contacted you I really didn’t know how I was going to be able to carry on with my life wearing some form of headwear.

I am absolutely certain that there will be others, with similar diagnoses, feeling the same level of anxiety and despair. What I would say to those people is that while this journey has not been easy, I have still been able to feel feminine in your headwear. I have still been able to go to work, to look healthy and be respected in my professional capacity while wearing a variety of your hats and headscarves.

I now have to try and remember what I wore on my last visit to a patient as they are often disappointed if I wear the same hat, or scarf twice! They look forward to seeing something else from my collection! I’ve had lots of compliments from colleagues and the other school mums while in your headwear. I’ve been asked by several people if I’ll show them how to tie a headscarf as they’d quite like to try it out for themselves, and they have a full head of hair!!

Friends and family have adjusted to my new look, and have accepted that this is me.

I’m comfortable with how I look and feel

While this is very encouraging I think it would only be fair to say that it is taking me slightly longer to adjust but I’m certainly making progress. I’m comfortable with how I look and feel, it’s more what’s underneath the hats and scarves that I struggle with. As yet I’ve not felt ready to expose my patchy bald head to my husband or children. To get around this I always wear one of your sleep hats. They are so easy to wear, and very comfortable. Most importantly, they have never slipped off overnight leaving me exposed! Which is a huge relief!’

Many thanks to SP for her frank and honest account about her struggles with hair loss. She is a remarkable woman (a nurse too, they’re very special folk!) and like all women we juggle a lot – work life, home life, our children’s lives and relationships. One thing is clear SP explored all avenues of diagnosis and information.

No one need face hair loss alone and we encourage all our long term hair loss clients to get in touch with www.alopecia.org.uk There will be a support group in your local area within the UK and if not close enough, their Facebook group that will put you in touch with other women in all stages of hair loss.