The first time my husband Luke and I became intimate, he didn’t know I had lymphedema. Since the swelling in my legs is mild, it’s not something he would have easily noticed (especially since he was quite distracted!).
Funny, it wasn’t the lymphedema as much as the compression stockings that I wasn’t ready to share with him. Laying naked in bed baring your body’s imperfections, even if it is a foot or arm that is fatter than the other, is beautiful – that’s what intimacy is all about. But for someone with lymphedema, getting to that state can feel less than sexy. There was no Dance of the Seven Veils for Luke.
In the movies, when they get hot and heavy, they don’t do a closeup to reveal the ingenue’s compression garments and watch while she takes a time-out to strenuously remove them. And that’s not a scene I wanted to play out either. At some point when we were getting close, I excused myself to the bathroom, yanked off my stockings, put my clothes back on and rejoined Luke.
The next morning (yes, I’m skipping ahead!) I slipped back into the bathroom to pour myself back inside my stockings. Luke would later confess he was baffled by the sounds that he had heard coming from the bathroom. Eventually he would learn that they were caused by the squeak of the rubber gloves I use to put on the stockings and smooth out the compression.
I don’t remember exactly when or how I told him about my lymphedema or what’s involved with putting on my iron legs, as I call them. But I remember that he didn’t think it was nearly as big a deal as I did. He took it in stride, not fully grasping the strange condition I described to him, but understanding that it was something that had a big impact on my life.
Luke and I have been married for years now. We argue like married couples do, but we never argue about my lymphedema. Never about the cost it adds to our budget or why we can’t take beach vacations or how wherever we go there’s always a third party called lymphedema vying for attention. He has never complained or made me feel badly about my condition. Just the opposite. He encourages me to get up early and swim in the morning, he walked beside me at the LRF Walk for Lymphedema and Lymphatic Diseases and he psyched me up to start this blog. And every day he jokes and tries to make me laugh at myself. Now that’s sexy.
Moping around and feeling sorry for yourself is not sexy. Being confident and accepting of yourself, even encased in wraps or pumps or compression garments, is attractive. Your partner will respond.
With all the extra worries and tasks that lymphedema adds to your day, sex may not be the first thing on your mind, but try not to let it be the last. The shadow of lymphedema can isolate us from other people and society. Don’t let it. We need to feel intimacy and closeness just like everybody else.
So don’t sneak off to the bathroom like I did to hide something we shouldn’t be ashamed of. If you’re lucky enough to have a Luke in your life, don’t forget that you’re not the only one in the relationship who needs support, love and attention.
And if you have yet to find your partner, be assured that sexiness is not measured by the size of our swollen limbs. Sexy is when you not only accept yourself and your own body parts, but also accept another person into your life with all of their imperfections too.