Chronic Sex

I am a firm believer that intimacy and desire are actually fueled by what can be found in a person’s heart — their goodness as well as their sex appeal, their overall compassion and strength as well as their physical attributes.

But when my chronic illnesses are whipping me about like an untethered sail, I tend to feel like I’ve lost every aspect of who I once was, and that often includes my normal desire for intimacy. I feel unattractive and, at times, unlovable. I don’t want to be touched. I want to hide myself from everyone, including me.

I am in pain, unable to sleep, and I’m the first to admit that these things don’t exactly spur romantic inclinations. Intimacy can feel like just one more obstacle course I must navigate when it hurts to move.

Dealing with chronic illness can eat away at my inner resolve, bringing about a feeling of isolation (because nobody truly understands what I am feeling) and fueling my fear that I am no longer a sexual being.

When you are feeling well, it is fairly easy to accentuate the positive and feel attractive for your spouse or partner. But when you suffer with chronic illnesses your appearance can evolve into that of someone you don’t recognize.

With dark circles under my eyes and a frightening amount of hair loss, I feel as though I look like some sort of deranged Muppet. I find myself avoiding mirrors and I wonder how on earth my husband could stand to look at me.

But I have to say, for the most part, these feelings of being unattractive because of my chronic illness are my issue and mine alone. My husband does not see me the way I see myself when I look in the mirror.

I realized this when I caught him staring at me one evening as we sat watching television. “Oh no,” I thought. “He sees me… all raw and withered from this horrible illness.”

Did I look extra tired? Did I look fat, because exercise is so difficult when I am always in pain? Did I look unattractive because my hair is so thin now? I pondered every possible thing wrong with me that he could be looking at, imagining what he was thinking.

Then he said something amazing.

“Do you know how beautiful you are?”

Time stood still for a moment. I blinked and shook my head in disagreement. Didn’t he see the dry, thin hair and bald spots on my head?  Didn’t he see the bags under my eyes or the new creases on my face?  He couldn’t miss the look of endless fatigue in my eyes… or could he?

The truth is, I wish I could see myself the way he sees me. In that moment I felt unlovable for many reasons beyond my appearance. I felt he deserved so much more than the woman sitting before him, struggling for survival from the pain. I felt I might be losing every battle I was fighting. I felt like I was not the wife I wanted to be, either on the inside or in my outwardly appearance. I felt unworthy of any compliment.

But here is the lesson in all of this: some of the intimacy problems those of us with chronic illness experience are caused by our own self-loathing. Yes, there is pain, and that has a legitimate effect on how open we feel to intimacy, but often much of what squelches our desire is how we see ourselves.

Do you see yourself as a sexy partner or as a complaining burden?

Yes, you may be in pain and feel like you’re not the person you once were, but you are still you. Sometimes feeling sexy takes effort. It takes seeing yourself as a sexual, desirable being and being kind to yourself.

Here are a few tips to change your outlook and improve your intimacy:

• Remember that feelings aren’t facts. You may feel less attractive because of your illness, but it is not always as visible on the outside as we think it is.
• Remember that you are loveable and you deserve praise and compliments just as much as anyone else. People who love you see beyond the illness. They see the beauty in your heart and how you live your life. They see that facing each day and pushing through is proof of your strength and that is sexy.
• Take your time. You have the right to feel every emotion and process the experience of being a chronic illness warrior at your own speed. If you are newly diagnosed with a chronic illness it may be difficult to move beyond the emotions you initially feel. This is natural, but do not allow them to set up housekeeping within you. Eventually, you need to focus on all that you still can do and all that you are. You are more than your illness.
• Take the time to take care of you. Do something for yourself that makes you feel good about your appearance, accomplishments, or simply feel more relaxed. Get a massage if that helps to ease pain or get your hair done if that makes you feel better about your reflection in the mirror. Try and take care of yourself as you did before you got sick.
• Focus on two things you love about yourself. Think of them at least once a day and compliment yourself on them, so that this positive voice is the one in your head — not the negative one that tells you all that is wrong with you.
• Keep communication with your partner open. If certain positions, movements, or specific activity hurts you or is just too difficult when you are not feeling well, discuss alternatives with your partner. Openly talking about your desires and feelings can actually increase intimacy between partners and improve their understanding of how you feel… which is knock-dead sexy.

You may need to practice these supportive, complimentary affirmations to overcome the negativity that goes hand-in-hand with any chronic illness.  Those who battle pain each day, or illness that impacts multiple aspects of their life, often have difficulty feeling their normal, typical levels of desire.

But remember, desire often begins by feeling good about yourself as well as being connected to your partner, so don’t let your struggle get the upper hand in how you feel about yourself or your relationship.

Offer loving care to yourself first, and remember you are more than your illness.

Barbara Leech is a mother of four who has battled lupus for more than 30 years. Also diagnosed with fibromyalgia and Hashimoto’s thyroiditis, she considers herself a survivor of all things: chronic illness, divorce, starting over. She is passionate about family, faith and small victories. You can find more of her writing on NewLifeOutlook.