An odd anniversary

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Lizzie
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An odd anniversary

Post by Lizzie » Wed Aug 24, 2011 1:45 pm

I'm aware of the fact that this group doesn't know me that long yet but strangely enough, it feels good to share this even though I'm nervous when typing this. But here we go.

A lot of people ask for awareness and support for people who have cancer or aids or MS. Don't get me wrong on this, I do think these are terrible conditions and have lost people with cancer, know people who have defeated it and people who live with MS. Strangely enough, quite a lot of people turn away with people who -look- very sick. Sure, we understand people with a brace or a cast or who sit in a weelchair but when people look normal apart from their skin... they're treated like filth. Next time you're out on the street, have a look around and try to locate those who have more freckles than what is expected to be 'normal' or people who have a birth mark in their face. Just the advice: just look once but you'll probably see in their eyes that they're not comfortable with your gaze.

How I know all of this? Well, I have a skin condition and have been treated like a piece of filth. It's even come so far that I tend to apologize for my appearance or the severeness of my condition when it flares up. A lot of people actually have psoriasis but most of them have it on their knees and elbows or in their hair which can be easily hidden. According to my mom, 'normal' wasn't printed in my dictionary and I guess she's right because I have a not so common version as I have it in my face and on the back of my hands which isn't so common according to my dermatologist. A few weeks ago, I caught myself smiling when I saw someone at a festival who had it too and didn't hide it. I can assure you that those people who can hide it will try their best to do so, even if it takes them to wear long sleeves all summer long. Sometimes I do wish I could do this but I can't as I have it all over my body. You can't come up with a spot where I don't have it, I dare you. ;-)

The reason I'm writing this is to ask for awareness for those who actually look diferent and wish they weren't so unique. Twenty years ago, in the month of August, I found a little spot on my knee and it has been around all this time. Apart from the rare few months that my dermatologist wanted to try a new treatment, I can't remember what it was like to have a clear skin since I was only nine years old twenty years ago.

My best experience with a six year old who didn't know what I had was this:
Kiddie: what's wrong with your face?
Me: oh it's just a bit ill, dear
Kiddie: ok... I've got pigtails!

I could share quite the opposite sort of stories but I reckon you can all imagine how cruel people can be. So for my twentieth psoriasis anniversary, I just want to ask you to think of people like me when you're worried about a pimple on your face, when you see someone with a bad skin or when your children or grandchildren want to know what's wrong with the person behind you in the line at the supermarket.

Lizzie

CeliaBeck

Re: An odd anniversary

Post by CeliaBeck » Wed Aug 24, 2011 3:43 pm

Hi Lizzie,

firstly i beg your pardon for my bad Englisch. :oops:
Between us, i think that au dacious. I feel with you. My Best Girl Friend (psoriasis) in the Face.
It dosen´t make you none other person. The World is very niggling.
Children and People can be very atrocious.
I wish one would to take are of consectivy.
To feel for the People.
How about for a herself [... The Human Stain ...

For you best wishes and hope to have a better and a nice time...]

Greetings Sandra

grannybear
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Re: An odd anniversary

Post by grannybear » Wed Aug 24, 2011 9:17 pm

Lizzie ...... My heart goes out to you. I have it slightly but only on my elbows and salve hides it. I know what it's like to me to have people question it and I can't begin to imagine what it's like for you to have people stare. We can just hope that someday people will be more understanding in how they meet people. Keep your chin up and just think of how good a person you are and that should help.

Oh yes, My grandson has two tiny spots and this year the US Air Force turned him down because of it. So even big organizations don't understand.

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Lizzie
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Re: An odd anniversary

Post by Lizzie » Thu Aug 25, 2011 1:24 pm

Angel, no need to say anything, just understanding it means more than words. :hug

Sandra: thank you.

Gran: the reason I wanted to actually organize a party in the first place was to celebrate how my condition has made me the person I am. One of my colleagues calls me rather tough when it comes to emotions while people who know me deeper know that's really just a mask to keep myself from getting hurt. I guess growing up with psoriasis has made me that way.
I think it's absolutely sad and an utter disgrace that the US Air Force denied your grandson because of the small spots. Oddly enough, I work for the government too and do come in contact with people every day.

When Jason was here in Belgium, there was a man in the crowd who's face and hands was completely red and what seemed to be little bits of skin coming off. Others who saw this said he was a nutter that painted himself red but I actually think he had a skin issue of some kind as well. I have the utmost respect for mister Isaacs but I was curious to see how he would react to this man and I can say my respect for him rose only further because he did approach this man and signed his book just as well.

Lizzie

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Hilary the Touched
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Re: An odd anniversary

Post by Hilary the Touched » Thu Aug 25, 2011 5:27 pm

Lizzie, thank you for sharing your story (and Mr. Isaacs'). I'm sorry you've had to deal with people's cruelty--if it's any comfort, it's probably motivated by ignorance (and people tend to fear what they don't understand) more than malevolence, and maybe you should feel flattered that people find you approachable enough to ask about your illness. Maybe by educating them, you'll help others with this and similar illnesses.
Thanks for the reminder that even our casual attitudes have an impact on others.

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Lizzie
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Re: An odd anniversary

Post by Lizzie » Fri Aug 26, 2011 10:32 am

Hilary, thanks for your kind words. It's not the ignorance or the questions that bother people in my situation, it's how others actually non-verbally react. If you're casually standing in line and the person in front of you is looking you up and down with a look of utter disgust on your face than it's just being plain stupid. If you've had such a condition for a long time, you do know these sort of looks and there are days when it really gets to you. I know of several people who won't leave their homes because of such reactions.
In that aspect, I'm very blessed with the band I've joined. None of them ever made a point out of it and now that we're reaching a number of 55 people, it's still not an issue. It's simply because all the regular players don't even 'see' it anymore that none of the new people flinch or pull away when I greet everyone with a kiss as it is our habbit.
I've been asked questions in the past and it's actually nice when people do that. At least it shows they're interested and want to learn and understand rather than think you've got lepracy, don't take showers or are some contagious species that should be locked away in a laboratory.

Lizzie

fruitbat
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Re: An odd anniversary

Post by fruitbat » Fri Aug 26, 2011 2:47 pm

Hugs from me too, Lizzie. I have Psoriasis on my left elbow and at times, on my scalp. My mum has it, my grandfather had it and his brother had it. Great-uncle L. often went to stay in the hospital for some kind of sun lamp treatment (That was 50 years ago, way before I was born.)

I agree with Hilary that ignorance is likely responsible for the reactions of many people.

Grannybear, regarding your grandson: I don't get how having Psoriasis would prevent him from fulfilling his duties in the Air Force?

catloveyes
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Re: An odd anniversary

Post by catloveyes » Fri Aug 26, 2011 6:44 pm

Ignorance is the basis for so many problems. I had a brother with Cerebral Palsy and people ran from us...it was painful and all I wanted to do was protect him from these uninformed, ignorant people.

You are a wonderful young lady and I also thank you so much for sharing your dear story..maybe one day progress will be made and people will stop hurting each other.

grannybear
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Re: An odd anniversary

Post by grannybear » Fri Aug 26, 2011 9:28 pm

fruitbat wrote:
Grannybear, regarding your grandson: I don't get how having Psoriasis would prevent him from fulfilling his duties in the Air Force?
The Doctors that examined him said that a flare up in a stressful situation might take his mind off his duties and prevent him from completing them. I don't agree but my word doesn't mean anything.
.

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inamac
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Re: An odd anniversary

Post by inamac » Sat Aug 27, 2011 3:59 pm

Lizzie wrote:When Jason was here in Belgium, there was a man in the crowd who's face and hands was completely red and what seemed to be little bits of skin coming off. Others who saw this said he was a nutter that painted himself red but I actually think he had a skin issue of some kind as well. I have the utmost respect for mister Isaacs but I was curious to see how he would react to this man and I can say my respect for him rose only further because he did approach this man and signed his book just as well.

Lizzie
Thank you for sharing your 'anniversary' Lizzie.

One of the reason Jason (and other Brits), may be more familiar with the disease is that one of our best playwrights, Dennis Potter, not only suffered himself, but also brought the issues to a wider audience with one of his last (and most famous) TV plays 'The Singing Detective', in which the main character (played by Michael Gambon) suffers from psoriatic arthritis.

No one better demonstrated how much it it possible to achieve despite (or perhaps because of) disability. Good luck in your own projects.

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Lizzie
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Re: An odd anniversary

Post by Lizzie » Sat Aug 27, 2011 4:37 pm

Thanks for telling me about that. It's something I didn't know about. Some Belgian public faces have admitted they have psoriasis but they have it in such invisible places that it got into the news for about a week and vanished ever since. When you're making a movie about it, you're making quite a strong statement of course.

The arthritis part is something I'm slightly scared of. When I was little and was moaning about my skin, my mom always used to say that I should be happy I'm able to do almost whatever I please, something others can't do. If I do get arthritis one day, I won't be and I don't think how I'll cope with that. I do know that having psoriasis isn't necessarily linked with the arthritis form of it but it's still something that often lurks in the back of my head.

Grannybear, I can see some sort of sense in the doctor's opinion but that would only make sense with someone who's covered with the plaques, not just two spots. I know a bloke who's been special forces and had it on his hands and hair when under severe stress and they never made an issue of his condition. The doctors can be such bloody idiots.

Lizzie

grannybear
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Re: An odd anniversary

Post by grannybear » Sat Aug 27, 2011 5:20 pm

Lizzie ..... My grandson is a certified EMT (emergency medical technician) almost to his Paramedic certification and they may have felt there would be too much stress and that would cause it to spread.

Gilly_sirl
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Re: An odd anniversary

Post by Gilly_sirl » Sun Aug 28, 2011 7:29 pm

Lizzie, :hug . I have an inkling of what you can feel, and I hope you always keep courage and pride!

None of us is only a face! If only we could always remember that, but oh well...

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