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Excerpt from "A Patient's Guide to Cutaneous Lymphoma"

Being intimate can be challenging when you have cutaneous lymphoma for the simple reason that plaques, lesions and rashes can be so uncomfortable that you don’t want to be touched. Also, sometimes people with cutaneous lymphoma feel self-conscious or uninterested in being intimate because of changes to their physical appearance. Some symptoms make the skin feel so raw that a physical experience would be aggravating. From itch to burning to lathering up with ointment after a shower, the details of this disease can surely create an obstacle to intimacy.

Couples work through this. There are times when you just won’t be sexual, and hopefully, your partner understands this. Other times, when there aren’t flare-ups, you’ll likely feel as sexual as you normally would. Some younger patients even go on to have children despite their disease.

Just like you need a solid support system around you to help you weather the ups and downs of this disease, you also need a partner whose love and understanding runs deeper than the physical. Says one patient, “When you have a disease, any kind of terrible disease, you need a partner who’s very, very understanding. It’s frustrating, from the care side, to not know what you can do to make the person you love feel better.”

Communication is key throughout the course of this disease. Letting your partner know when it’s ok to touch and when it’s not, explaining gently that it’s not a rejection of the other person but a symptom of the condition of your skin, is important. As one patient says, “You have to tell your partner, ‘I love you with all my heart, but I can’t explain what I’m going through’ and I’m sure the partner will understand, knowing that you love each other.” Riding the roller coaster of a chronic disease can actually help you grow stronger in love.

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