Saturday 8th May 2021

Alopecia Me and Alopecia UK:

Blog by Key Contributor Jacky

 

Following this Wednesday’s Webinar with Bradley and Jane, I have been doing a bit of research and come to realise that I don’t actually fit neatly into a square or box category for Alopecia. It got me thinking, does anyone neatly fall into a one size fits all for everything?

I have eyelashes and all my left eyebrow, whereas the right eyebrow decides if it wants to appear or not; I suppose this means I am luckier than others and accordingly I do not have Alopecia Totalis, which is all scalp and facial hair loss. I certainly do not have Alopecia Universallis, I did in 2005 but then gradually the facial and body hairs started to reappear.

Along with the facial hair I have today, I also have most of my body hair, although it is patchy and random. Does this mean I have gone back to Alopecia Areata? I do have fuzz on my head which is itching daily and my right eyebrow has decided to make an appearance this month, giving more of an even image than the usual quizzical one up brow look.

Alopecia Areata is upsetting and annoying, there is never a degree of stasis, it is always coming and going, doing it’s thing, snaking around and messing with your head. You see, from my experience of talking with Alopecian’s, I have come to see that we would, once we have been there, prefer the all or nothing scenario. This limbo of not knowing what is going to happen next is the absolute worst.

I am lucky to be clinging on to my hair features as thanks to Covid and Cancer, my Microblading last took place in April 2019, I absolutely loved the effect of having semi-permanent eyebrows to frame my face and give character to an otherwise very blank canvas. The process of getting these done was painful and made me sneeze a lot (funnily, this is a common reaction).

Following my Cancer treatment my eyesight has changed, and I now wear glasses which I also love as these dark frames give me a more interesting look than the pale egglike image I perceived before. I also think that if you lose all your eyelashes, glasses become essential for keeping the dust out of your eyes, eyelashes are vital for this very reason and it is incredibly frustrating when they go and oddly can be more upsetting than losing head hair.

This monologue I have just written can be seen written by other Alopecian’s, almost daily on the Alopecia UK Facebook support page. What a wonderful group this is, providing a safe space where we can ask questions, vent our frustrations, and share our stories.

I was rather late to the AUK fan club and thought I could manage alone (thank you very much), however this coping mechanism of I’m better off not thinking about it was only fooling myself. By joining in the group, interacting, and sending positive messages, reading stories and facts, and gaining helpful advice, it has made me accept my appearance more in the last 5 years than ever before. I no longer feel alone but a member of a wonderful community, part of the Alopecia family.

Watching the Trendco Webinar this week with Jen and Amy from AUK, I remembered meeting Amy in Dundee at an AUK Event that I attended with my salon manager Linda, we had wigs for people to try on and mostly spent the day talking to people and listening to stories and very personal journeys. It was my first Alopecia get together and I was awe struck by the women around me in all their confident glory. I felt a bit of a fraud in my wig to be honest, thinking “hang on I’m just like you but you don’t see me”, but of course there is no right or wrong and you’re beautiful regardless of the choice. Some days it is nice to wear a wig and others a scarf or headwear, on other days nothing at all.

Please, please, please visit the www.alopecia.org.uk website, where you can find links to the monthly Alopecia Café, which is a friendly support area via zoom online, with your camera on or off, the next meeting for Adults is this Monday 10th May at 1pm, you will need to register to get a space through the website.

By joining AUK for £20 you will receive discounts to products and services which can be found on the service directory, you will also be donating to the Charity and help fund projects, research, and help aid promotion of Alopecia awareness to a wider audience.

You could also listen or download the Podcast next week from the AUK group which I think can be found on every streaming platform.

The future is a brighter place for people and families new and old to the world of Alopecia thanks to this amazing group of people.

Thank you, Alopecia UK, for everything you do.

Love Jacky x x

Alopecia UK