Spouses Corner
by Clara Dewke

July, 1997

Dear Spouses of Psoriatics:

When Ed and I met he already had psoriasis, so my life with Ed has always been with the disease. I remember the first time I was introduced to his psoriasis. We were having lunch. Ed was feeling sorry for himself. I was trying to make him understand that it was what he had inside that mattered. After all, peel off the skin and everyone looks the same, psoriasis or no psoriasis.

Ed showed me his arms and asked, "Does this bother you?"

"No, frankly, it doesn't."

I guess it was hard for Ed to believe someone could care about him no matter his flaws. I suppose, unlike other women he had dated, I was different. I care more about Ed the person than Ed the "flaker."

We continued to date. Finally, we were married in June, 1996. Yes, we are still honeymooning when we can lose the kids.

October, 2008: Our family has grown by 4 more grand children since 1997 (total = 7). Our two daughters, the mothers of these grand children, were mine by a previous marriage, and were married themselves when Ed entered our lives. I don't believe Ed found the acquisition of a full-blown family overly stressful in our early years. His step daughters love him and the grand children have never experienced or can't remember life without Papa Ed. Through the years the entire family has managed to stay geographically close and that means a sturdy mutual support network for all of us, all of the time.

(July, 1997, continued)  The only part of Ed's psoriasis that really bothered me was his I-feel-sorry-for-myself attitude. Being the outspoken person I am, I told him his psoriasis isn't any worse than other diseases people have. I told Ed to deal with his psoriasis and "move on." I know that might sound harsh, especially since the psoriasis comes and goes.

I do have a sympathetic side. We had been together about eight months when I decided I wanted a better understanding of what Ed goes through. He was on a business trip when I decided to try out his awful smelling shampoo. I know for a fact now that people with psoriasis have thick skulls because that shampoo sent me through the roof! I'm thinking it might have caused some brain damage. Honestly, there should be a law against anything that burns and smells that bad. One of the active ingredients in Ed's shampoo is "tar" and I'll tell you, after using it I definitely felt like pavement. If it's all right with you psoriatics, and if I start flaking, I think I'll try Head & Shoulders™ first.

About 5 years ago I developed an itchy, inflamed lesion on my leg that flaked and looked an awfully lot like Ed's 'spots.'  I went for a consult with Ed's dermatologist and he confirmed it.  You are only the second couple I've had who both got psoriasis later in life.  Of course, I argued that I 'caught it' from Ed. Now, lesions on my elbows and my calf seem to come and go for no apparent reason.  I guess I'm what would be called a 'mild' flaker.  Fortunately Ed always has some of his goops around (though he uses them far less than he used to, thanks to his biologic medicine).

(July, 1997, continued) As the spouse of a psoriatic, I know how difficult it is to control the flakes. Been there, done that. The color schemes I like, Hunter Green and Maroon, don't go well with psoriasis, but Ed and I compromise. He flakes, I dust, shake and clean a lot. Why? Because I love him and would not give him up for all the flakes in the world.

Actually, probably because I live with Ed every day, I don't "see" his psoriasis other than the meds, shower cap and food handler's gloves. His psoriasis is a part of our life. I can tell you as a spouse, the only thing you can do is love and try to understand their feelings. No one without the disease can understand what it's like to live with psoriasis. But unless you live with a psoriatic, you can't understand what that's like, either. I can and do behave like "Dr. Dewke," rubbing in his creams, ointments and lotions when he wants me to, and that's a part of loving him. But Ed, like any psoriatic, has got to love himself, too. Sometimes this has to be taught—just ask Ed!

In the 2002-2004 time frame, Ed was using one or more biologics that cleared his skin but did not help his psoriatic arthritis. Those months helped both of us put the two faces of this disease into proper perspective.  Ed's skin psoriasis was messy, itchy and sometimes painful — but equally hurtful, it was embarrassing and humiliating.  Ed was lucky in his status as a 'telecommuter' who did NOT have to interact face-to-face with co-workers OR clients on a regular basis.  (On most days he stayed in his attic and talked to himself or on the phone.)  The psoriatic arthritis, on the other hand, was agonizing and crippling.  There were days when Ed had to negotiate the stairs on his rear end!  Days when he would come home from a quick trip to the post office nearly in tears, complaining the pain in his legs made it nearly impossible for him to drive. Finally, in the 2006-2007 time frame, Ed's dermatologist and rheumatologist discussed his case and decided he should change to a biologic that helps BOTH skin psoriasis and psoriatic arthritis. That's when he started Humira, which he still uses, so far with great success.

(July, 1997, continued) I know a lot of you feel lost and you don't know what to do. I agree with Ed, laughter can be potent medicine. (I laugh today when I think of my shampoo experiment!) If I can help you, please let me know. You have a sympathetic friend. -Clara Dewke

P.S. Share stories with us about your life as the spouse of a psoriatic. I know for a fact you've got something to say! ...

I know that Ed has written at FlakeHQ about the psychological strain that can be caused by psoriasis shifting from awful to 'all gone' and back again. It irritates me when my mild elbow and calf lesions reappear after a few months of absence. It has made me sensitive to the huge shifts in mental state that must accompany severe rebounds after a successful course of some therapy — the kind of rebounds that Ed has experienced often. It's those rough shifts in mental states, more than the pain and unpleasantness of the active disease, that make psoriasis a disease that's intimately shared with one's spouse. How could it not be?

I look forward to hearing from you. Email me at [email protected].  (Ed says clicking on my byline at the top of this page should also open your email program with my address in the "to" line).