Vitiligo doesn’t bother me anymore. This is how I’ve felt for years now. Vitiligo doesn’t effect me anymore.
I still have vitiligo. It spreads and contracts on its own. I notice it sometimes. It’s there, but I don’t care.
Recently at a coffee shop a woman next to me struck up a conversation. She just wanted someone to talk, and even though I was working on my laptop, she started chatting. Trying to be nice I responded politely. After a few minutes of banter I realized she really wanted to talk. Then she commented on my vitiligo, telling me that I could make it go away if I really wanted to.
“Oh Great,” I thought. Here we go with another really helpful person…
Not only does she comment on my visible medical condition, but she also has advice. Reluctantly I entertained the subject. She wanted to make sure I knew about the handheld UVB light wand. I know about them.
I’ve had one for years. It worked by the way. It just took time. Time I didn’t care to spend getting rid of vitiligo. So I stopped.
After she rambled on a bit about the treatment, her psoriasis skin condition (similar to vitiligo), her past emotional trauma and dietary struggles and then paused for me to respond.
So we talked about UVB light treatments. We talked about peoples perception of vitiligo and skin issues and we talked about why I don’t care about vitiligo any more. 9 years ago I stopped doing medical treatments for vitiligo. A couple years after that I stopped using UVB light wands too.
Any why she asked? Because I stopped caring about what other people might think. And now I don’t care if someone notices. I don’t care if someone says something. I don’t care if someone has unsolicited advice.
For me it’s just like having brown hair. I have brown hair. So what? If someone says something then ok. If someone notices I have brown hair then fine. If someone wants to talk about it, ok no problem.
Looking back, it was a process to get to this point. I cared about other people feelings and thoughts. Imaging what other people would think and feel killed my confidence, destroyed my social life and kept me from dating. It effected my professional life as well. My lack of confidence kept me from applying for better jobs and from doing my personal best at work. A lack of confidence effected every corner of my life.
But I wasn’t going to just lay down and accept my lack of confidence. I wanted a life that wasn’t filled with worry and avoidance.
So I started learning. I started writing. I started talking to my friends. I learned how to be a friend. I learned about how people operate socially. Professionally I grew as well. In my personal life I pursued hobbies of all kinds. I soaked up information. I love learning.
What’s different now? Well everything.
Now I don’t care about people seeing my vitiligo. And very few people do by the way, because they notice my confidant body language, not the spots on my skin. They notice my smile, not the corners of my mouth that have spots.
People see me, not my vitiligo. And I like me. And that’s why I don’t care about having vitiligo. It just doesn’t matter that much anymore.
I’m really curious to hear from people when they forget about having vitiligo. Because if you have vitiligo, there are moments, however brief that you forget about having vitiligo. You have moments where having vitiligo doesn’t matter. When does that happen for you? How does that happen for you?
I stopped caring not long after I found out I had vitiligo. I went to the dermatologist and he diagnosed me and gave me some treatment options. At the time I had 2 young boys and didn’t have the time or money to deal with the creams and UV treatments. My parents raised me to be confident and not worry about what other people think of you except the ones in you life that matter. So thanks to my parents I have never worried about my vitiligo. I really only think about it before I go out in the sun. I have lost over 60% of my pigment so I have to really use the sunscreen before I go to the pool or beach. I’m comfortable in my skin and embrace my uniqueness.
I have vitiligo for more than 10years now,I decided along time ago that it won’t bother me anymore,I even forgot about it but people will always let you know that you are different. Its life and I have accepted it. My mother told me everyone has a problem some and some are not.
My vitiligo first appeared as a small patch on my face, just below my nose. This was three years ago, and I have no new patches since. But I know how unpredictable vitiligo is, and I’ve hardly had a peaceful night’s sleep since it first appeared, because of the anxiety of when it might appear again.
I’m at a point now where I’m telling myself I have to learn how to accept it, and not care about what other people think, and still enjoy life.
Thank you Keith for your positive attitude towards the condition. You’ve given me hope. ☺️
Use uvb light it’s very effective at early stage
Hi, I developed vitiligo around the age of 30. I seemed to stem from getting sun burn, shortly after it appeared on my fingers & slightly at the corners of my mouth. It was a shock at first but I quickly knew what it was. For the first months I did nothing but then I started to put a bit of makeup to cover the corners of my mouth. it was from that point onward I knew I’d started a path that would end badly. I am now 37 & over the past years it has got worse and me thus the cover up has got larger. it’s now grown on my hands & face & other areas. At the beginning it was manageable but over the years of it getting worse I’ve systematically withdrawn myself. I now know very few people & leave the house as little as I can. being a man I’ve never used makeup & that’s where I feel it would be much easier if I were female. If a woman wears tons of make up it’s no big deal, but for a man it can be very different. therefore I have struggled covering it as I try to use very little so as I don’t look like a man wearing makeup. At this point I’ve list any hope at all. I regularly think about not being here, the anxiety I face everyday is tiresome. I hold down a decent job but even that’s getting harder. the only time I feel ok is on my own. I’ve seriously started to believe that I will one day not be strong enough anymore & I’ll have to go. The only thing I’m interested in is a cure and to be honest when I see all these things it makes me feel worse because there isn’t one and it’s all about learning to live with it. Luckily I didn’t have it as a child but in some ways I think it may have been better. If you have to go through it as a child I think you’ve got a better chance of learning to live with it. you don’t get choices to hide etc when ya s child, and other will be brutally honest with u which u learn to deal with. Because I had my entire childhood into adulthood without it I’ve not had that experience. At my age I feel it’s hard to become a different person now, I’d rather not be at all. The only thing that I wish for is watching the news & hearing there’s a cure. How long I can carry on I just don’t know. I feel like I’ll get overcome with the anxiety & it won’t be my choice anymore. I want to be here……but not like this.
kind regards,
Dan
Hi, I started to develope vitiligo around the age of 30, it came from being sun burnt, shortly after it appeared. At first it was on the extremities of my hands & a little at the corners of my mouth. now it’s a lot worse I try using makeup but it probably looks worse, I’m at the point where I feel I need to end this now. I’m 37 & I don’t have a life, I don’t feel like I’ll be losing much, I only go out to work & I have regular thoughts about not being here anymore.
I’ve had vitiligo since I was around 9 years old maybe a little older, and all I have to say is that fundamentally the notion that something about your physical appearance isn’t beautiful is so driven by capitalism, oppression, Eurocentric beauty standards and misogyny. There is nothing wrong with anyone’s natural face, you should take all necessary steps ie daily verbal affirmations, detoxing social media or simply reframing and expanding your perception of beauty, in order to reach a similar conclusion. Your skin is your skin, any reason for wanting to change it will undoubtedly come from a desire to be more accepted by a system that is rapidly narrowing that which is deems acceptable. Before you make any change that isn’t somewhat spontaneous/light-hearted, interrogate the reasons why. In my experience it almost always boils down to wanting to be “prettier”. But why? Why is being pretty so important? oh and why are the criteria of beauty so specific ?????? Um PROBABLY because being pretty means being richer because you can be a sponsored ig health bitch, more popular because pretty is power so people are attracted to you, having more opportunities, being treated like an actual human being (rare ik). Don’t contribute to a system of sadness and exclusion by conforming to it because it succeeded in making you feel sufficiently bad about yourself. Pls don’t let it win and please !!!! Don’t fuel it.
Also side note, I get so low-key excited when I see someone else with vitiligo, I don’t not care about it, because it’s part of me and I’m trying to appreciate and understand every part of me and to be totally honest I think it’s beautiful because beauty is so broad and has so much scope and the way it’s been weaponised to generate so much self hate is an epidemic.
Fun thing to do is to take note of all the things you find beautiful, not even just visually: sounds, emotions, colours, emotions, train stations, sharks, gold, gems, plants, veins, clothes, joy, smiling, the sea, the sky, it’s so varied. When you start to understand how broad beauty is you start to see your place within beauty, no longer outside or on the periphery because your vitiligo keeps you out, but equally as worthy of being beautiful.
That said, when we truly see how comodified beauty has become through its €a$il¥ attainable unattainability you might start to think that beauty is truly subjective and it’s perimeters are limitless so maybe beauty doesn’t exist anyway. And maybe if beauty doesnt exist then capitalism will finally keel over and die? But then again maybe I’m just very ready to watch capitalism and it’s horrible side products die?? Hmmm not sure…
Also ?? Not sure if this is controversial but a lot of the changes in my vitiligo in terms of its initial development and current contracting have coincided with emotional trauma and stress that I didn’t even realised I’d carried. MH is real guys, try to make things a little easier for your mind and your body by improving your relationship with your skin.
This was me waffling a lot but it was fun. Also! Physionomy is bullllllllshit, it’s big ol’ 2018 and you’re moving like a Victorian, do better.
Vitiligo gang … We OUT here