So I have had my vitiligo for 20+ years now. I still find it hard to answer when people ask about it. Generally I find myself saying something like 'it's a genetic condition where I loose skin pigment, like Michael Jackson when he bleached himself' . Lol. But then I always fell like there's an awkward silence afterwards. I just wonder what everyone else out there says or if theres something someone else uses that I feel like explains it better. I do sometimes feel myself get irritated and embarrassed when strangers ask me about it, I just wonder sometimes where people get the courage to come out and just ask a stranger something so personal like that!! Anyways, hope to hear what others have to say on this!
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that's exactly the way i feel, i get nervous when people ask me about my vitiligo, and i just answerd with the Michael Jackson story lol, grettings!. ps. sorry, my english sucks!
This is a very common situation that arises among all of us who have Vitiligo... I absolutely hate it when I hear people say that I have a skin disease, and I am quick to counter with "it is not a DISEASE, it is a DISORDER!" What's the difference? Well, the word disease is associated with bad things, and has a lot of negative connotations. A disorder can break down to a literal meaning of out of alignment (DIS-ORDER), or not in order...
I would rather people ask me about it, rather than stare - I just explain to people it's an auto immune disease. I just think that there are worse things I could have instead of vitiligo
Chris, I also dread the summer. I've had vitiligo since my early teens (30+) years. It doesn't spread anymore. Most noticeable on my arms, knees ankles and feet. I live in San Antonio and always avoid wearing short sleeves in the summer at work. So most of my coworkers don't notice. Well, I'm sure some have noticed but have been too polite to say anything since they see I try to hide it. Mostly, I hear, "aren't you hot?" "Why do you always wear long sleeves?" At home, I wear shorts and such. This is only around my co-workers
I, also, have had this condition for about 25 years. Never started until I was in my 30's. Guess I've been lucky. No one really asks me about it, so I don't have to explain. My friends and family don't really bring it up. Personally, I never heard of this until I got it myself. Don't know about you, but every year I dread the summer. Hard to hide it then. I love the beach, but now try to stay off...
I find myself also referring to Michael Jackson, people often are more surprised that he had skin condition not just depjgmented by choice! My main points are: it's hereditary, like autoimmune where my body attacks my pigmentation cells and that it's not contagious! If it gets awkward I joke and say ' so one day I may be completely white and albino' people tend to relax more if they can see you joke and don't make it do serious. Generally I point it out to people and they say they can't even notice?! Maybe they are polite, or maybe we are paranoid ?! I tell people before they ask, casually drop it into conversation - that way your in control and not caught feeling unsure what to say. In summer when it's noticeable I'm always telling people I hate the sun because it becomes more obvious, again I joke and say ' I'll just move somewhere that it snows/ cold so I can stay pale'. I'm from Australia and it gets preety hot here - makes it hard to cover up in the heat :/
I would say the same thing, that it's a genetic condition, my grandfather had vitiligo also. After I depigged people asked me how I got so white and it was awkward explaining how I had the white spots and depigmented totally.
Since then I've become more accepting of my white skin tone...people don't ask anymore so that's good. The hyperpigmentation I do have I guess is seen as more of a skin blemish than a disorder.
My vitiligo is in places that are relatively easy to hide if I am wearing a shirt and the only people that know about it are some of my close friends and parents. I have not yet had the courage to show or tell many other people, I usually avoid situations where I would have to and use things to cover it up. It took me like 30 minuets to explain to my girlfriend about it and for her to understand. It was really tough, but she's really accepting of it now.
The close friends of mine that I explained it to just reacted with "Oh ok", and then carried on like normal around me, so I guess it can be relatively straight forward with people you know, but I have never had to explain it to a stranger. I think I would basically just tell them what it is and leave it at that unless they ask more questions.
Replies
that's exactly the way i feel, i get nervous when people ask me about my vitiligo, and i just answerd with the Michael Jackson story lol, grettings!. ps. sorry, my english sucks!
This is a very common situation that arises among all of us who have Vitiligo... I absolutely hate it when I hear people say that I have a skin disease, and I am quick to counter with "it is not a DISEASE, it is a DISORDER!" What's the difference? Well, the word disease is associated with bad things, and has a lot of negative connotations. A disorder can break down to a literal meaning of out of alignment (DIS-ORDER), or not in order...
I, also, have had this condition for about 25 years. Never started until I was in my 30's. Guess I've been lucky. No one really asks me about it, so I don't have to explain. My friends and family don't really bring it up. Personally, I never heard of this until I got it myself. Don't know about you, but every year I dread the summer. Hard to hide it then. I love the beach, but now try to stay off...
Keep the faith!
I would say the same thing, that it's a genetic condition, my grandfather had vitiligo also. After I depigged people asked me how I got so white and it was awkward explaining how I had the white spots and depigmented totally.
Since then I've become more accepting of my white skin tone...people don't ask anymore so that's good. The hyperpigmentation I do have I guess is seen as more of a skin blemish than a disorder.
Hi Niki
My vitiligo is in places that are relatively easy to hide if I am wearing a shirt and the only people that know about it are some of my close friends and parents. I have not yet had the courage to show or tell many other people, I usually avoid situations where I would have to and use things to cover it up. It took me like 30 minuets to explain to my girlfriend about it and for her to understand. It was really tough, but she's really accepting of it now.
The close friends of mine that I explained it to just reacted with "Oh ok", and then carried on like normal around me, so I guess it can be relatively straight forward with people you know, but I have never had to explain it to a stranger. I think I would basically just tell them what it is and leave it at that unless they ask more questions.
I don't explain it, just mention I have vitiligo.
Usually in the summer months people will ask "What happened to your hands?"
So I reply "I have no pigment on my hands."
Sometimes the conversation switches to another topic, but sometimes people will continue to ask "Were you born like that?"
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