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As my husband Tom mentions in his article, our eczema journey began over twenty-two years ago. I think he is amazing the way he has handled severe eczema. Despite itching, bleeding and infections, he has had a successful career, held leadership positions in the community, traveled, and been involved with his family.
Living with eczema has not always been easy for us. A person with eczema doesn’t always realize the impact this disease has on a partner because the patient’s energy is spent dealing with the eczema. Although Tom feels his most recent flare-up was the first in several years, he often has eczema on parts of his body. He deals with it, but he isn’t quite as patient as when he is clear of eczema.
As a supporting partner, the most important thing, I believe, is to know the personality of the person with eczema. Everyone differs in his or her support needs. Tom is very independent. He wants to take charge of dealing with his eczema. He doesn’t want seemingly helpful suggestions such as, “I think you need to go to the doctor now.” Our relationship works better if I let him decide when he needs help.
I have spoken with women who have eczema, and they often want more support from their partners. Be a partner in researching suggested drugs for treatment. Tom mentioned his saga with prednisone. We did not know enough to question the physician about this drug. I did not realize how severe the side effects could be until the surgeon who tried to repair Tom’s rotator cuff told me that nothing could be done to fix it; prednisone had destroyed Tom’s connective tissues. Work with your partner to find a doctor who relates to both of you. We were so fortunate to find Dr. Jon Hanifin.
A partner needs a sense of humor and flexibility. The episode in the Buenos Aires restaurant illustrated this for me. When Tom bled spontaneously on a white tablecloth, the looks on the waiters’ faces made me laugh. Tom dealt with it, so it was not embarrassing. Don’t worry about blood on furniture at home; just put a sheet over the couch. When visiting friends, if bleeding on their sheets bothers you and them, stay in a motel.
Getting involved with the National Eczema Association (NEA) has made a big difference for us. We learn the latest about treatments. We also meet people who have eczema, and we learn from them. It is helpful to talk with people who know what you and your spouse are going through. We have found the NEA Patient Conferences to be very helpful. We always come away with new information.