04 Jul 07:46
Looks, coping, healthcare system
What was the most difficult challenge you as a Psoriasis sufferer had to face since being diagnosed?
Please don't include specific medical product brand names or external links.
04 Jul 07:59
A few years ago I was one of 5 bridesmaids to my friend. The only one whom had P. It was time to look for the perfect dress but I couldn't make it as I had to go away on business. One of the bridesmaids decided to choose the dress and it was knee high. Now, she did not like me at all (and I didn't care) but she still went, bought the dress (one size smaller than what I was) knowing I had Psoriasis. When I got back from my trip and saw the dress, first thing that went through my mind was "I HAVE P!" I came back a day before the wedding and the boutique was closed by that time. I could not exchange the dress for something else. I. was. furious. I felt like Rage Carrie and wanted to become like an angry Godzilla destroying everything. Well, story short. I had to wear that dress. I had P on my ankles only but everybody could see it. I had to walk down that isle knowing everybody could see my legs. Had to stand in the front, feeling everybody's eyes on my P, Walking out of the church, I could still feel their eyes burning on my skin. Luckily I bounce back very quickly in life and just thought (with a string of swear words) &*&^%$^&&^%%& every body . I enjoyed the day so much and eventually (very brave and after a few glasses of wine) I actually put on a bikini and went for a swim. Oh man, you should've seen that woman's face. Oh and by the way, the dress that was one size to small...well...it fitted like a glove. lol.
04 Jul 08:13
I am a researcher, I have to attend scientific conferences. I attend but cannot eat a lot of foods arranged there. This is very difficult to manage suitable foods friendly for P.
04 Jul 08:27
I can be so difficult Md. Luckily whenever I have to go to a conference with my Director, they specifically ask dietary preference. It makes things so much better for us.
04 Jul 09:39
I havnt suffered for years Michelle,psoriasis hasnt taken up my life thankfully, i know its there everyday and thats it, psoriatic arthritis was my biggest worry as i went all doom and gloom and thought my life had ended as iwould have to train to do a different type of work etc , it hasnt and i am thankful for that,:)I dont like to show my P and i have always been this way,relationships , its hard at first and then after a while its okay but, i try to be positive and not let it bother me too much as i wont get anywhere in life , i am good thank you :)
04 Jul 10:12
psoriatic arthritis has taken its toll causing a lot of side issues but I am still 100% mobile. My worst is now 30 yrs later genital P
04 Jul 10:24
Looking in a mirror , felt disgusted by the reflection I was seeing .
04 Jul 10:48
I try not to think this way Chris, i have seen it all my life, had a few joys, not many , where its been near gone from my torso etc, that was in the past, not seen it like that again as clear as it was at this particular time around 10 years ago, for 2 years it was great,funny thing is i was doing all the bad things at that time,eating anything, drinking like a fish,taking dodgy substances and my skin was great, dont get that at all. maybe the substances cleared it ?
04 Jul 11:15
I may have had a great remedy for P and i didnt and dont know it,? :)
04 Jul 11:42
When my P disappeared for a whole couple of years, I thought I had the right diet going John and like you, I must've done something right, had a remedy and didn't know it. I need some rewinding...
04 Jul 13:36
Honestly, the worst has been facing the realities as I've read posts on this forum for the past week: that psoriasis can take additional forms beyond what I've already experienced, that it can become a great deal worse (and already has with genital P), and will be part of me till the day I die. [Unwilling to end on a depressing note, I must say that I am heartened by the possibilities offered by Leonie Mateer's posts yesterday, that careful ph monitoring may send psoriasis, as well as my other autoimmune disorders, into remission. Gonna give that plan a real effort!]
04 Jul 13:49
The most difficult challenge was not knowing a thing about Psoriasis...I had no idea where to turn until I went to a Derm with no results & at a very exorbitant cost as I had no medical aid... then I started googling as discovered from the Derm what I had.....AND THEN I FOUND FLAYM,!!!!
04 Jul 15:01
Mine is hereditary, so I was born with it. My grandfather had it, I have t and so does my younger brother.
As I have always had it, I do not know of any different feelings!
04 Jul 15:08
Same here Justine , born lifer, my mothers gift to me, I cant say she didnt leave me anything :) and psoriatic arthritis 33 years later, what a gift,, well 2 gifts :)
04 Jul 15:24
The biggest struggle for me has been Loving and approving of myself. I have got much better over the years, but insecutities still surface from time to time. I have been with my huaband for 15 years now. Throughout the time I have had moments of feeling sorry for him when my skin has been at its worst. Thinking he deserves to have a normal wife. He always reassures me and makes me feel better and Loves me unconditionally. He is the one who first told me I need to Love my skin and not give it so much hate. He is my ultimate blessing ❤
04 Jul 15:46
One in a million you got there Michelle :)
04 Jul 16:02
Thanks John ❤ I really think so. Some times I wonder how I got so lucky and in moments of insecurity I wonder if my luck will run out.. but I need to cancel that type of thought and just remain grateful 😊
04 Jul 16:35
Wouldn’t say being on here changed my life but I’ve picked up lots of tips which have been very useful but my psoriasis is manageable most of the time anyway . I would like to add a tip , I have psoriasis under my bust and only this week I have found that my grandsons nappy cream works very well !!
04 Jul 18:46
Taking my T shirt off on a beach in Cuba to go for a swim, I was paranoid about everybody staring at me, in the end it was OK and probably no one noticed my P....but I very nearly didn't do it !
04 Jul 18:56
Well done for that Chris ,i know about the paranoia as many of us know, i am going to a quiet part of the beach tomorrow so i can get some sun on my flakes and salt from the sea,i need to get clear for my holiday in october, i have ordered a slendertone ab toner to get a 6 pack , clear skin hopefully and some hard toned abs ,i could just pencil them in on my stomach but,hhmm thats cheating :) should give me more confidence i hope :)
05 Jul 05:00
It is sad to hear what everyone has gone through and maybe still but one thing I can deduce from this is that each and every one of you has become stronger and wise in the process of acceptance. Thank you all xx
05 Jul 14:15
Mum had to convince drs that my p was not because she wasn't washing and looking after me properly,dr accused her of this ,I was just a baby then. For me it's been the comments,from a stranger asking if I had been burnt in a fire,too more recently a client convinced that I had aids and told me that I should be working outside and not in people's homes,that was the worst comment to this day andI won't ever forget that one.I tried to educate her on psoriorias and she was convinced it was aids.
05 Jul 15:10
Really , i didnt think AIDS can be like psoriasis? thats so sad, i feel sorry for them thinking like thSue thinking like this, i am sorry for you as that dosnt help ones self confidence if one has that,well too much washing can make it worse, i shower once a day and thats okay, i used to shower 2 times a day and that just aggravated it more. so sorry for this Sue
05 Jul 15:16
Least work did go speak to that client,mind you I never had to go back to her again,I don't know what aids looks like but that comment was the worst I ever will have I guess,all she saw was a about 7 spits on hands as was covered up,but can't cover hands,not to worry,but I'm tough enough,t hanks John
05 Jul 15:41
Spits = spots can spell , just bad at typing,
06 Jul 05:14
Sue, that is terrible and I'm so sorry you had to go through that embarrassment. Aids doesn't look like P nor is it the same. That person was just plain ...what can I call her...Illiterate? I have seen many people with aids, was in close contact with them too and let me tell you, that lady should go buy a book about Aids and see what it is. She should've have been making a comment like that in the first place as she's looking down on people with an illness. I'm so glad you never went back and I'm glad you have found us Sue. Don't worry about the typo's. I make a lot of them, blladig theley waye, and we all understand what you say. 😁. You're a tough lady and we are happy to have you here. xx
06 Jul 10:21
Sue and Michelle - your stories make me angry. Why are people so mean? I would not sleep at night if I said and did those things to people. It is in my family. Both my brother and mother had it and I know my brother regularly got the ‘aids’ comment. I only just got it at 55 and I have one person who constantly has to point it out to me if he sees it on my hands or arms and pretends he doesn’t remember me telling him what it is. I would just never do that. Maybe it’s because I have lived with it in my family. There are some amazing and inspiring people in this group.
06 Jul 10:36
I agree with you Desley, it does make one angry when hearing stories like these but this is just an everyday thing for us sufferers. We should not let people get to us. I don't waste my time or breath on ignorant people at all. I leave it to my face to do the talking. There are such amazing people on Flaym and since I've joined, I have learned so much about them. They are truly wonderful sincere people. :) Living with
P sufferers makes it easy to really understand an illness if. Any kind of illness and it will make that person more compassionate about it all as well. They don't judge. Only illiterate ignorant people will have something to say but only because they are shallow. We can't even judge them. Just teach them about the illness and they have to either accept it or become more shallow with no vision. :)
06 Jul 14:05
Today again,as pulled my sleeves up to do a bathroom and forgot to pull them down,client said omg what happened to you were you burnt in a fire? Haha again and again ,I get this comment,si told the story of p since baby etc,she was cool especially when I said ,you can't catch it,day to day life for me,does get me down at times
06 Jul 17:02
Sue, some people also thought I got burned. I was so tired of explaining that I left them to think what they want. Hang in there. Its not easy but you will get through this. We are here for you :)
08 Jul 10:59
Thanks Michelle,I do feel like I have to explain and yes one does get sick of doing so ,it's like a record getting played over and over a never ending story.
12 Jul 20:42
Understanding what the heck psoriasis is, I'm still trying to understand it now!
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