Tuesday, 13 September 2022

vitiligo : how my body attacked it's own skin

 oh gosh, this is a post i didn't think i'd ever write, but here i am. and i'm happy to share my story, as always, with you all, in the hopes that it helps somebody else out there; either in helping you feel more "normal", or in helping you to know more information so you don't stare. 

so, it all started as the spring sun began to shine. i noticed that there was some pigment on my face that potentially was a bit different to what i would normally expect. at first i thought it was just some age spots or maybe melasma because of my extended breastfeeding, then after a bit of googling, i was convinced i had tinea versicolor, which is an overgrowth of some of the fungus that normally lives on your face. anyhow, with already having type 1 diabetes, i'm used to my body doing strange things because of my hormones, so i think i just popped it down to some weird hormone thing.

*this above photo was when i first started to think something was up (April 2022), it actually moved me to tears, hence the photo on the right. i just felt as though it ages me hugely, and i felt ashamed. which is all in my head, i realise, and i'm still honestly working through those feelings, as you can tell from the amount of times i touch my hair and my face in my YouTube video.

then a few months ago, my brother came over and declared 'what's up with your face?' in the way only a younger brother can get away with. at which point i had to be honest about the fact that it was probably worth seeing a doctor in case it was a signal of something more fearsome, or just in case anything could be done about it. 

at first i got a message from the doctor saying it was just sunspots based on the photo i had sent in, and not to worry about it, but if i didn't agree with that diagnosis to come on in and be seen in person. when i saw the doctor, she confirmed three possible outcomes (not at all sunspots) and referred me to a dermatologist, who when seen 6 weeks later confirmed it as vitiligo, definitely not melasma and definitely not tinea versicolour. 

the only thing that the doctor could do for me was to give me a very gentle steroid cream to apply for a month and hope somehow it would keep it from spreading/itching. so far it has seemingly done both, but with such a slow rate of growth anyway, only time will tell... the doctor said that vitiligo is so unique to each person, that there's zero way of knowing how and where it will spread, if i'll get more patches, one large patch, half my face will be white, etc (though it is often symmetrical). the only thing to do is wear spf50 and a big sunhat to avoid the patch getting burned, given it has zero protection to the sun. 

the thing is, i have so many unanswered questions about it, and because it's not a life-threatening disease in most cases, i guess there's not the funding for research to find a "cure". there are however very good cover up creams if i ever wanted to go down that route. 

but for now, i sort of think it looks ok, i'm really going to miss being able to go out in the sun in quite the same way as i used to. but my main concern is the fact that i've got yet another auto-immune condition, and i'd really not like to get another. i feel like i've got off very lightly this time, no injections, no fear of a seizure, but if "auto-immune diseases run in packs" as my dermatologist said, then how can i prevent another one, or is that not at all possible?

so i've read a little about German New Medicine, which has some interesting theories on disease, and also am trying to make sure i eat more vitamins and minerals overall, to make sure my body is well fuelled for my energetic job as a mum and homemaker. but MOST of all, i want to stop worrying about things and work on my mental health and ways of thinking and responding to the world, because lowering my stress has got to be the top priority. and we do live in a very very stressful world indeed.

i'm so extremely grateful for the press coverage of vitiligo in recent years, because it's lead me to believe that my vitiligo is beautiful and unique and special. it's not something i feel i need to hide. thanks to Winnie Harlow especially. BUT i am working through a load of shame i feel about getting another auto-immune condition, which is stupid, but heh, i'm human. and i'm also still staring at it every day trying to figure out that this is now MY face - and i don't think that will really happen until i know if it's stopped spreading or not, so i can really get used to it being what i look like - if that makes sense?

i felt it was important to share my story, because until i got vitiligo i didn't know how common it was - 1% of people. also, stupidly, naively, i thought it only affected those with darker skin colours, and in fact white / caucasian skin is just as likely, it's just far less obvious, so i hadn't seen as many photos. please don't judge my lack of knowledge in this post either, and perhaps please take it as a sign i'm at the beginning of my journey and i truly know very little about vitiligo, so please if you know good resources let me know!

as Megan Relin says in her fab TedX talk, i feel very fortunate to have started on my vitiligo journey in my 30s, when i'm married, have kids, have the NHS, have a good status in society as such, because it could be much harder in other societies, being younger when diagnosed, etc. and i send all my biggest love to anyone who feels ashamed or feels stigmatised for their vitiligo.

at the end of the day, i repeat this quote from Louisa May Alcott:

“If you feel your value lies in being merely decorative, I fear that someday you might find yourself believing that’s all that you really are. Time erodes all such beauty, but what it cannot diminish is the wonderful workings of your mind: Your humor, your kindness, and your moral courage. These are the things I cherish so in you. I so wish I could give my girls a more just world. But I know you’ll make it a better place.”

ok, that's enough for today, i'll leave you with the video in case you haven't seen it yet, and i hope that this is encouraging to you... xx

1 comment:

  1. Thank you for sharing. I was led her by your youtube channel which I came across through your voice on your Mother's video about the a modern take on the Prodigal son. God bless you and heal you where you need in Jesus Name and through His love. I feel peace when I watch your youtube channel, thank you. Bless you.


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