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.
Lymphedema Diary 
beautiful blog today, very courageous to share
Thank you so much for posting this. As I read this I immediately thought you were writing my story (I can honestly day that I had the same “bathroom” runs…the hardest part was hiding the stockings and the gloves!) ! My husband and I have been married for 4 years and he continues to be so supportive of my condition, even understanding the limited beach vacations.
I’m so glad to hear that you have a supportive partner, Adrienne. Thanks for reading!
A very important topic… Thanks for writing and sharing… It’s. like being caught with the “Bridget Jones” panties only worse… The rubber gloves are always worth a mention as only a fellow lymphie would understand the “tools of the trade”!!! My dr always says I look like I am going gardening!!!
Wow! Thank you for sharing this. I’m one year post-hysterectomy for endometrial cancer. The removal of lymph nodes for staging (only 10 nodes total) combined with previously having inguinal hernia surgery left me with pelvic lymphedema. The “perfect storm” as my step-mother calls it. Fortunately, my cancer was stage 1a so no treatment was necessary. I just had my first visit with a physical therapist and now face nightly short-stretch compression wrapping, compression garments and the compression pump. I’m divorced and not currently in a relationship so the prospect of even going there is now weighing heavily on my mind. Your story helps put a little perspective on things. Something that doesn’t come easily right now.
I am lucky enough to have a “Luke” in my life and we fall about laughing about the subject of my stockings, he is so OK with it just like your Luke and makes me feel so easy about it. Those of us with “Lukes” in our lives are very luck, and as you say those who have not got a Luke in their life, be confident and do not be embarrassed about these stockings it’s something we have to wear just like people have to wear glasses or false teeth.
Good point, Sarah, very true!
Love this, thank u
Please send me any updates regarding sex and lymphedema. I have secondary LE in my lower extremities. Thank you.
i have the opposite issue, i have been married for 12 years and was going out with the same guy another 6 years before that, my lipodema was triggered by emergency caesarean births and over the years the disease has progressed to stage 3 going on 4. My husband has now decided that he is physically repulsed by my body and refuses to have any sort of intimacy whatsoever, no touchng , kissing , cuddling nothing and he makes a point of telling me how repulsive my body is to look out and that he could never possibliy find fat attractive, he spends all of his time on porn sites and looking for other woman to have cyber sex with on facebook. How do you get past that?
I am so sorry you have to live not only with lymphedema but with a complete ass. That is horrible. You cant progress with bettering yourself being exposed to such abuse. Karma is one hell of a bitch. I hope you find peace and get some help because this has to have such an impact on you mentally.
Thank you!! I found my black compression stockings a positive garment when reuniting with an old boyfriend (after 59 years)!!! I had OC (stage1a 12 yrs ago) and the removal of 32 lymph nodes! I have just found an MD and top flight PT! I am finding myself very emotional as I go to PT!! I end up crying almost daily crying, Feels like huge buried eminent of some sort!! It is a strange experience. So glad to find websites- especially this one!!!! Blessings to all!!
That story has given me great encouragement as I have been worrying about that side of my life living with my left leg lympodema. Thanks
I happy I found this site, thank you for the creator
Deborah, thanks for following!
I have lymphedemia in both legs this is so inspiring thank you for sharing
You are awesome! I just discovered that I may have developed lymphedema six months after OC surgery.. I have some compression socks, elevating the legs, doing exercises. I started wondering about a relationship. This is very inspiring! Thank you! 😊
I’m wishing you a New Year of loving and supportive relationships!