Vitiligo: just when I thought I couldn't hate myself any more...

Hey. So, this will be my first time ever airing my problems to people I don't know! If you could bear with me, in that case, I'd be grateful...

I've had vitiligo for while now. I think about 5 years. Maybe. I started with a patch on my foot, then the other foot, then my hands, then my eyes, and so on... am absolutely caked in it now. Approx 50% coverage, in all the delightful patches. I often think I'd prefer if all my vitiligo skin was in one place. Like 50% is my number, but it's from the top down, so my legs are still nice and even... 😂 Sadly, it's the patches!

Anyway, I've been through the requisite steroid creams - none of which has been remotely helpful - and I naively thought, somewhere in the back of my mind, that it would just go away. My white patches would turn back to...well, also white, but less so. Then the dermatologist said "maybe if we try a different topical steroid on the face? I mean, there really isnt anything we can do for the trunk...". I broke. I obviously knew vitiligo was a forever thing, but I hadn't heard anyone say the words yet. I cried for the first time, submitting myself to the grief - and I think it is a kind of grief. Mourning for the me I knew. Anyway, fast forward 2 years, and I'm losing my grip. This lid I thought I'd clamped down so tightly has an air break. Feelings are starting to leak out, and I'm not coping that well.

My traditional coping mechanisms are making a joke of it, and saying "ah well, it is what it is". Assuming that ignoring it or employing rigid pragmatism will somehow render it dealt with.

I accidentally got myself referred to a clinical psychologist at the medical centre. When asked how I felt about my diagnosis I'd said, jokingly (or so I thought), "just when I thought I couldn't hate myself anymore ha ha ha", and I was referred. Unfortunately, me being me, I just fluffed through the sessions, putting my best "ah well" mask on and never really delving into it all that much. I didnt open myself up to the psychologist at all. I should've and now I really regret not making the most of my opportunity for help.

So, here I am now. 3 st overweight, getting uglier by the day, with little or no respect for myself. I go to the gym with my husband a few days a week, and my body is starting to change shape - which is great - but the more it does, the more I realise that it doesn't matter. I'm never going to have beautiful, neat, even skin. I will always have my piggy, jowly, face; my giant forehead; my huge ears (which I have had reduced once already); my scruffy, frizzy hair; and, worst of all, my patchy, pasty, stretch-marky, huge pored, untannable, skin. I hate it. I hate me. And I don't know how to stop.

[Bellyful]

Hi,

Just wanted to say, it sounds like you're really down on everything about your appearance. As much as I'm also struggling with my skin issues at present, I don't thing any doctor can say anything is forever these days. They're doing massive amounts of research into vitiligo at present. I've actually come across a fair bit in the search to sort out my chemical peel induced hypo pigmentation. I'm currently on tacrolimus for my face. But even now, other than steroid creams, what have you tried? Have they given you light therapy? I honestly believe vitiligo will be cured in a few years. In the meantime, what about people like Winnie Harlow, making it more ... well hip I suppose. Do you use any camouflage products? What about spray tan to 'muffle' the effects a little? Sending you a big hug

[younique]

Hi there, can I call you Betty?

Sorry to hear of your despair and frustration. Thank you for sharing your story. I love your wit and writing style. Although I'm sure the content of your post was difficult to share, it seems you've been able to keep a good attitude despite it all. I was able to see your personality shine through your words and i think the ability you have to express yourself is very engaging.

Do you write often? This forum is a great place to post your thoughts and feelings about your condition. I've found interacting with a community of people who can relate to you on a very fundamental level, is sometimes just as healing as therapy.

I know right now it's difficult to accept that you've been handed a condition that seems only to complicate your life.. you may be wondering, why do i have to deal with this burden everyday. That's what I had a hard time facing, once I realized there was no escaping or fixing my body.

We are here in these bodies. We exist in the world with perceived flaws and limitations. But it doesn't have to define us. It's your choice how you want to respond to being different.

In an ideal world, a world in which you are the person you are right now, what would you want to change?

[DolaChangingFacesUK]

Hello there and welcome to the Changing Faces community. It sounds like things are very difficult for you at the moment and you have been struggling with things. However, you really have taken a really brave step to express openly how you feel about your vitiligo in this community. I hope you start to build some support and connection with the members on here.

In our experience, getting support and being able to engage with it can offer be a matter of timing and readiness – perhaps you were not ready at the time, but if you were to decide you did want it in the future, you could go to your GP. You can also get in touch with the Support and Information Line here at Changing Faces by calling 0300 012 0275 and talking through your situation, or email us at [e-mail]. We also offer counselling support specifically around coping with visible difference, so that may be something you’d like to explore as an option.