Communications (September, 1997)

Stressed Since Childhood
by Brigitte

Dear Ed: In my opinion, it is the combination of depression, stress and upset that figure predominantly in the occurrence of Psoriasis, and it is only when your hormones do stuff inside your body that it'll go away completely.

I first got Psoriasis (on my arms, my legs and my back) at the age of 11, while I was in grade 5 in 1962. (By the way, I'm 46 yrs old now.) Needless to say, I went through hell at "Fern Avenue Public School." What was done and said to me was worse than cruel. Because of how my skin looked, I was shunned by everyone in school (and my parents, which certainly didn't help the matter ... they STILL look at me in disgust and have hurtful things to say) all the way up to when I finally got into High School (not that it ended there). Some of the things that happened during this gr 5 to gr 8 period was that I was called the Kuddy Girl (kids touched me, screamed, then ran to touch someone else and tauntingly said "you've got Brigitte's Kuddy's"). Even while in gr 8 I'd have kindergarten kids coming up to me and say/do this. During gr 6, at recess and during lunch, groups of kids would surround me holding each others hands so I couldn't get out, and they'd take turns spitting at me. Not just on clothing, but aiming for my face and hair. And all the while the teachers would stand outside with their arms crossed, smiling and watching. I'd cry for help, crouching down and covering my face, and begging for them to stop, but help only came when the school bell rang.

Of couse, as soon as the day was done it would start all over, and I'd end up running all the way home. Then things took a turn for the worse, when half way through grade 6 I got psoriasis on my face and head. The skin got red, then white, then peeled, then turned purple on my cheeks, chin, nose and forehead. On my head, my hair started falling out on the right side, from center to ear, from front to crown. I looked like a complete freak. Kids at school and the neighborhood got worse. My parents got worse. I had not one friend to my name. As far as I was concerned nobody gave a damn about me. By gr 7 I was desperate for a friend and so hoped to gain acceptance by doing bad things (shop-lifting) and, low and behold, I was now in a bad crowd, but at least I wasn't alone anymore. Of course, "Murphy" has always resided on my shoulder and I was caught and parents were informed. Now bear in mind that previous to this I had been constantly beat by my father (for saying "she" to my mom; for being 5 minutes late coming home from school; for not eating my supper; for hitting my brother and sister when they cut up my dresses and stuck pencils through my goldfish; for speaking to store keepers while a parent was buying something; for daring to read in my room; for daring to read under the sheets at night with a flashlight, cause my dad had removed the lightbulb so I couldn't read; for speaking out against my mom because I had to drink powdered milk while my siblings got real milk, and lord help me, for daring to eat a banana, because they were meant only for my brother and sister; God...there's so very much more but I won't get into the rest). Well, this time my dad really "taught me a lesson". Not only was I whipped with the belt this time; I was also given the opportunity to feel clenched fists raining down on me for over half an hour. I ended up with two black eyes, one of which was swollen shut, a bloodied nose, skin missing off my face, four teeth knocked out, and my left arm, from shoulder to elbow, was just raw swollen flesh, no skin left and bleeding. Picture how I looked.

And the next day? Yes, I was sent to school. What happened? Laughter, more cruel jokes, teachers nodding their heads in approval, more spitting, and me in agony, crying from both pain and embarrassment. And my so called friends? Turned against me. So naturally, my psoriasis got even worse than before. There wasn't a part of my body that wasn't covered with scales and red patches.

The next year I was finally brought to a dermatologist at Sunnybrook Hospital where I was diagnosed as having Psoriasis and underwent standing in front of a wall of lights (no eye protection) which I presume must have been a forerunner to PUVA. My parents still didn't understand, and insisted I wasn't washing enough. I have no idea now what the doctor might have told them. I was told nothing except that I would have it for the rest of my life. So gr 7 was spent with my mother watching me wash and then taking a large rough floor scrub brush and scrubbing my body all over with it until I bled. I was then covered with calamine lotion. During grades 6, 7 and 8 I attempted to kill myself several times. Once by almost swallowing a cup of Draino mixed with water, but my father crashed his fist through the glass bathroom door and knocked the cup out of my hand just as it had reached my lips (then he beat me). The second time I took a razor blade and ever so slowly (because of fear and it hurt) started cutting away at my right wrist by one of my veins (finally stopped cause it hurt too much). And the third time by swallowing a bottle of 100 Aspirins (vomited everything up). Obviously I failed, but really, I did not want to live. What life did I have? And man oh man, did I ever hate my parents and my school.

Once I got to high school things got a little better. I wasn't beat anymore, only slapped. I still didn't have any friends, but at least no one was mean to me anymore. (The kids from "Fern" must've gone elsewhere.) Finally halfway thru gr 10 (at Bickford Park) I did make some friends, and one girl in particular (Carol) gave me the understanding of what a friend was. It was wonderful to have someone to talk to, to laugh with, to go to the movies, rollarskating and walking up and down Younge St. and hanging out at Sam The Record Man. I had fun for the first time in my life....and you guessed it, my psoriasis cleared up and went away. I graduated, got a job, went to clubs and parties, and through her sister, who had a best friend, who had a brother (whom I met on New Years Eve 1969), I ended up falling in love and got married 9 months later.

Life was good...for a while. About a year into married life things got rough and my psoriasis came back, with plaques covering my legs, arms and hands. That kind of made things worse in our marriage. Four years after we got married I gave birth to our first daughter. The second daughter came along 3 years after that. When it came to my psoriasis, It was totally gone during both pregnancies; but before and after each, the skin problem persisted. After the second child was born (1976) the Psoriasis came back slowly, but got worse as the years rolled by.

In 1978 we moved to Windsor (a four hour drive from Toronto) and my skin stayed pretty much in the same horrible shape. As for me personally, sure, I had a family of my own, a series of jobs (the last one lasted 12 years until I quit due to unimaginable stress levels and a severe bout of depression which lasted over 3 years—I just came out of it 2 months ago) but I wasn't happy and the skin just kept getting worse. When I first started that 12 year job (in 1984) I was still very shy, quiet, wearing pants and long sleeve shirts to hide my skin, being quite embarrassed when my knuckles decided to split and bleed, and kept my head down most of the time when talking to people. I had (still have?) a very low self-esteem, and was/am unsure of myself. However, over the years a part of me changed. I started to talk to people (helps when you're employed in a trucking company) and threw myself into my work, which I loved. I got more gutsy, talking to anyone who would listen, joined several organizations (via the Ontario Genealogical Society I've done my family tree and travelled to both England and Germany to meet with relatives—and no one in my family has ever had Psoriasis!) and clubs, and finally got around to going to a local dermatologist. (for the first time since I was a kid) Now I've been on PUVA for the last 3 years and I suppose it's keeping my skin in check, but it still hasn't cleared. But please take note, that while I was diagnosed as depressed and being manic-depressive, I was on drugs. First it was Prozac. I almost slit my wrists while on that. Made the depression worse and the skin stayed the same. Then came Lorazipam, replaced by Diazipam (valium) in conjunction with the anti-depressant Paxil. My skin still stayed the same. Crusty on all joints everywhere, and a few spots scattered here and there. The problem I found while on Paxil, was that I kept getting worse in the head. Tired, forgetful, quick to anger, couldn't get to sleep at night, but worst of all, constant memories of my childhood (I attempted twice to throw myself into the Detroit River).

These items combined with the on-the-job-stress slowly increased my Psoriasis again, although I was still going to PUVA. Finally I quit work, got in a car accident, got a chiropractor, and have spent 1997 basically doing nothing but sitting around the house, not caring about anything or anybody, least of all myself.

My psychiatrist kicked me out of his office with a stern warning not to come back (he never even gave me the time to tell him what I've just told you) because in his words "I have patients far more ill than you," so I went to another one who said to keep on taking the Paxil and the Diazipan, but also gave me a prescription for Lithium, which I was to take 3 times a day (this was during May and June). Wow...did my Psoriasis EVER flair up!!! Now, not only did I have it on my joints, but on ALL my skin as well, and NEVER in all my life had it been as bad as this!!! Further depression.

Then my faithfull PUVA nurse told me that Lithium makes psoriasis worse, so, without telling any doctors (I haven't gone to the psychiatrist or my family doctor) I slowly started to ween myself off of ALL of the anti-depressant drugs. What was the point? My head was still a mess and my skin now looked monsterous. Then came the miracle cure, SKIN-CAP. Oh glorious spray, wherefore art thou? Yes I know, in a warehouse in Mississauga soon to be shipped back to Spain.

For the entire month of July and part of August my Psoriasis WAS GONE! It was like a dream come true. Here I was, finally over my depression, finally off of all the drugs, and finally having the honour of having clear skin again. I wore shorts & tank tops and a bathing suit at a public beach no less! Wow, those few weeks were wonderful (even if I did have to pay $40 per 100 ml can). Of course, that's history now and what does my skin look like now???? Even WORSE than before. So I guess what I read about Skin-Cap is true. Once it's stopped, your skin will be worse off than before you started.

As for my dermatologist, he saw me after I'd been using Skin-Cap for about 3 weeks and I was almost totally clear, so he dipped my PUVA back to once a week. Actually, I don't much see the point in continuing with that either. It hasn't helped in the past and it isn't helping now. But, I'll keep going, for the sake of talking to fellow patients and friendships made at the clinic.

On a positive note, I contacted the "PSORIASIS SOCIETY OF CANADA," got literature, volunteered to chair and organize the "National Psoriasis Walk" down here, and am going to start a Windsor Chapter for the PSC so we can have monthly support group meetings. At the same time, I'm also joining the Canadian Psoriasis Foundation (whom I've already contacted) and intend to join the National Psoriasis Foundation in the U.S. Of couse, in the meantime, I'm reading my eyes out here in front of the computer, trying to find every web site and newsgroup to get more information. I really am surprised by the number. I never knew the ratio was so high.

So in closing (to what has become a mini novel—and I WILL write a book about myself one day), let me say this to you about that. You Ed, have a unique way of approaching Psoriasis. I'm going to get a copy of your book (and a second one for my parents!!) and hopefully I too can learn to look at this with humor. What a concept!! And yes, I'll now try to talk in "Flake Speak." As for my subject in starting out? Now you know why I believe stress, unhappiness and depression are the cause of Psoriasis. Remember, the only time I was ever free of the disease was when I was pregnant, was happy for the first time, and fell in love during the summer of '69. And as for my condition right now ... it is really horrible, but I'm throwing myself into things, will hopefully find another job real soon, and the hell with how my skin looks. If others don't like it, they can look away. I've gone through so much change that I really don't care anymore what others might think when they see my skin (just please let my hands be clear when I go for job interviews). Oh, and one more thing. I do try to de-stress myself, much along the same lines that you do. I enjoy time alone; talking and laughing with strangers; writing poetry; reading fantasy novels; I love it when my cat (Gizmo) sits on my lap, lays against my chest, or curls itself around my neck, resting its head on my shoulder. Most especially I love the rugged outdoors—walking in a dense forest, looking up at or being on top of cliffs and waterfalls, sitting on a rocky shoreline listening to Jonathan Livingston Seagull sing songs to me whilst becoming one with the waves laping to shore. I find this contentment when I drive north to the Bruce Penninsula and hang out in the area between Wiaton and Tobamorry. Most especially at the Cape Croker Indian Reservation, the Scenic Caves around Lion's Head, and at Inglis Falls by Owen Sound. Since my husband of 27 years does not share this interest, I like to escape up there by myself for a few days at a time. I'm even getting into making "Dream Catchers," for to me, they symbolize all the tranquility I so cherish. I bid you goodbye for now, Brigitte Ball

*****

Ed's Response:

Brigitte: To the extent that psoriatics need excuses, you've got a whopper. Nobody is going to fault you your flakes given the environment in which you grew up.

You are not the first person to relate psoriasis remission during pregnancy. I've heard stories of all sorts of maladies going away, or changing radically, during pregnancy. You may be on to something about the hormones, though I'm not sure what good news might emerge from that for the rest of us. None the less, I'm glad to know God built devices into pregnant women to afford them some protection from other nagging ills of life, at least while they are procreating.

That you have the energy (and unrepressed recollection) to share your story today suggests you've got plenty of inner strength and, no matter the difficulties, were never cut out for suicide. I imagine your two children are glad of that. I hope you continue to make inroads into finding that tranquility you so cherish. Lord knows, it's your turn. -Ed

 

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