In My Skin (standard:non fiction, 2337 words)
Author: MandyPants	Added: Dec 02 2004	Views/Reads: 3446/2370	Story vote: 0.00 (0 votes)
A story of my life as a young lady with spots.

Click here to read the first 75 lines of the story

covered with redish, scaly patches. I was devistated but I diligently 
applied the creams, with the best of hopes that the spots would go away 
and that I would be me again. 

I can't remember the exact time frames of the days following. The creams
did not help to rid my skin of the lesions, some came, some went. All 
in all, after a few months I was still covered with them and went to 
yet another doctor too see if he could help. I was prescribed a coal 
tar mixture (by the way not very encouraging when you are given three 
huge tubs at once)to be applied nightly, accompanied by ultra violet 
sun treatments to be administered at a hospital. The UV treatments took 
place three times weekly. It took me an hour, one way, to get there. 

The coal tar was black and stained my bedclothes and sheets. It reeked
of well, coal. The hospital appointments were mandatory, in order for 
the treatment to have a chance of working, I needed to attend every 
session. My work schedule had to change and as a result I lost out on 
most good shifts. My income lessened and my expenses increased due to 
the cost of the coal tar and the transit required to get me to my 
appointments. 

The UV appointments were not pleasant. The nurses did their best (some
of them did) but nothing could soften the unpleasantries of having to 
join what feels like an assembly line, only to then proceed to your 
small little room (in which you are pressured to be out of A.S.A.P in 
order to accomodate the masses) and to strip naked, covering your 
nipples with small strips of paper towels, taped to your skin (to 
prevent burning) for what litterally takes 30 seconds to a minute of UV 
exposure in a stand up booth. You do get used to it, I did. 

I went for the treatments for six months. At which time, even though
they were helping to get rid of some spots and to flatten most, I threw 
in the paper towel strips. I could no longer handle having my daily 
life revolve around a treatment that was "sort of working". I felt that 
I lived, ate and breathed psoriasis. I had no opportunity to just be 
me, I had become a girl with psoriasis, consumed by her disease. I 
decided to take a break. 

Taking a break from all treatments was the best thing that I could have
done. Even though my skin got worse, I was able to be the person under 
it, for the first time in awhile. I focussed my attentions on coming to 
grips with my disease, not with trying to make it go away. Now, I don't 
want to make this sound simple. The emotional ramifications of this 
disease can only be understood by someone who has it as severly as I 
do. If I were writing this four years ago, I would have different 
things to say about it. 

Aside from the obvious social issues that come with this disease, there
are also great feelings of shame and self-degradation involoved. You 
wonder what you may have done so as to deserve this wrath of God. You 
wonder what the universe may be trying to teach you about yourself. You 
ask yourself "Am I so vain that this is the only way I could learn not 
to be?" You feel guilty for giving up a treatment, even though it was 
more harmful then helpful. You convince yourself that maybe you do 
deserve it, by going through all of the wrongs that you commited in 
your lifetime. 

I have to write about the social aspects, if I didn't I'd feel as though
I had not done the people with this disease any justice. I personally 
am so tired of even thinking about other people's ignorance in this 
regard. Even if you cover yourself up under clothes, there may still be 
spots that are visible to other people. Also, you begin to resent 
wearing long pants and long sleeve shirts in the dead of summer. 
People, because they are not able to recognize what the marks are on my 
skin, can be cruel. 

As a person with psoriasis, you will always notice people give you some
sort of look, or their general reaction, if you subject yourself to 
watching them, I try not too. They either look at my skin with 
curiousity or fear and sometimes with disgust. This used to keep me 
covered and in hiding because I could not deal with their stares. The 
questions you get, although not meant to be cruel, are so insensitive 
and annoying. They are often delivered with the sort of expression a 
person would make if they smelled something awful. It is almost 
impossible to feel normal and to forget about your skin, when you are 
constantly reminded of it. 

Enough of that though, anyone that has ever had anything out of the
ordinary happen to them physically knows what this is like. I live with 
it every single day, and have for the last six years. I bet you can 
guess that I am used to it by now. Only very rarely do I actually get 
upset by something someone said or did. It sometimes can still bother 
me if someone trivializes the disease. I don't like sympathy either 
though so I guess people can't win. My advice to other people that 
encounter people with this disease, is for them to assume that they 
know nothing. Treat the person the same as you would and anyone and 
assume that if they want to talk about it, they will bring it up. 

I have to get going, I can't even proof read. Cut me some slack. Lastly
though, I need to state that it is not just the emotional effects of 
this disease that are so troubling. My skin itches morning, noon and 
night. I wake up almost every morning with blood underneath my nails 
from scratching in my sleep. You do get used to the itch but not 
always. My skin sheds so much, causing me great embarrassment. Wherever 
I walk I can leave a trail of skin, it's in my hair, on my clothes and 
in my bedsheets. Everytime I look at my shedded skin, I feel shame, 
even though my logical mind knows that I shouldn't. 

My knees and elbows crack and bleed in the winter months, causing scabs
to form. My skin burns when I get out of the shower sometimes, or when 
I put on cream. I an raw and bleeding somewhere on my body, every 
single day. My ears are filled with spots that make them look like they 
have not been cleaned in weeks. My hair falls out due to the patches on 
my scalp and depending on which source you believe, it could cause  
permanemt damage to my folicles. 

I have tried various creams both medical and herbal. The medically
prescribed ones have steroids in them and I refuse to take them 
anymore. The steroids seep into your skin and can have so many terrible 
effects. I have tried diets, baths and sunbathing. The sunbathing is 
the only thing that has truly and consistently helped. Although with 
this approach you have to worry about cancer and wrinkles. 

Some people have a patch or two. Some people have it all over their
body. There are three main different types of psoriasis. Psoriasis can 
lead to psoriatic arthritis, an auto immune related inflammatory 
affliction, which I have at only twenty eight years old. No one person 
with this disease is the same, no one case is the same. Treatment may 
or may not work for someone and it can stop working for that same 
person for no explainable reason. 

My point of writing this is to try to create some more public awareness
of this disease. It would be a lot easier for people coping with it to 
come to terms, if their were less things to put up with, namely others 
ignorance of the subject. 

I am a happy girl, who loves life. I have completely accepted my reality
in living with psoriasis. I am able to be a normal person now. I wear 
skirts and tank tops and I ignore people's stares. I am getting married 
in two months to the love of my life who I met four years ago. Meaning 
that he loves me just the way that I am, scales and all. If I can find 
this in life, then anyone suffering with psoriasis can too! For those 
who suffer with it, my best advice ever recieved, given to me by 
someone I met who had psoriasis for over thirty years, when I asked him 
how he coped, he said "I just ignore it." I never thought I could at 
the time, but I did/do. Focus on your inside aswell as trying to treat 
your outside. 

Thanks. 


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