Chronic illness, sex, and intimacy: The conversation we’re not having

There’s an area of life with chronic illness that many of us rarely bring up at doctor appointments, even while it quietly reshapes our relationships: sex and intimacy.

When you’re living with a chronic illness like lupus, nearly every area of life changes. Energy shifts. Priorities change. Career and friendships look different. Even your relationship with your body evolves. And often, intimacy takes a hit, not because love disappears between you and your partner, but because pain, fatigue, medications, mental health, and body image all start pulling at the same thread.

In today’s dating culture, keeping a relationship alive can be challenging even in the best circumstances. Add chronic illness, and intimacy can slide to the bottom of the list simply because survival is taking up most of the bandwidth. And yet, intimacy matters. It supports emotional closeness, mental health, and the sense of being more than a patient or a caregiver. In fact, it’s one of the things that separates romantic partnership from every other relationship we have in our lives.

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Research backs up what so many couples already know firsthand: Their intimacy life shifted after chronic illness showed up. People living with chronic illness report significantly lower sexual activity and satisfaction compared with the general population, most often due to pain, fatigue, medication side effects, depression, anxiety, and changes in body image. Despite these changes to our intimate lives, sexual health and intimacy are rarely discussed by healthcare providers, leaving many of us to navigate these changes alone, often in silence.

And silence can be heavy.

In support groups and late-night text message conversations I engage in, I hear the same themes. People are talking about rashes, scars, hair loss, weight changes, mobility devices, and the grief of no longer recognizing their own bodies because of medication or disease. Some share that they feel “broken,” or like they’ve failed their partner because they aren’t the same person they were before diagnosis.

Others are exhausted beyond words, where even the idea of sex feels like another thing they can’t keep up with. I’ve been in this exact scenario during long seasons of major flares, and it adds an additional layer of overwhelm to the proverbial plate.

If any of this sounds familiar, please hear this clearly: You are not alone, and you are not failing.

Sustaining intimacy with chronic illness requires reimagining what intimacy even means. And that can only be defined by the two people in the relationship.

Intimacy is so much broader than sex. It can be gentle and ordinary, like reaching for your partner’s hand in the grocery store, a long hug in the kitchen, or teasing one another while folding laundry. And it can be playful and light, rooted in humor. It can be emotional, too, like feeling seen, desired, and safe enough to be honest about what your body can and cannot do right now.

And then there is the hard truth we need to look at: There will be seasons when penetrative sex simply isn’t on the table. And while that can be deeply frustrating or painful to grieve, it is far more common than we likely realize. Removing the expectation that every intimate moment has to look like it once did can be incredibly liberating.

What I believe hurts many relationships in this area, when chronic illness is at play, is dragging yesterday’s expectations into today’s reality. What helps instead? Curiosity, flexibility, and honest, no-filter conversations about what feels good now, not what used to.

Intimacy can still be sensual, meaningful, and connective without intercourse. Here are a few low-pressure, chronic illness-friendly ways to rediscover closeness:

Slow dancing at home. Dim the lights, play a song that holds memories, and sway together, standing or sitting, in the bed or the living room. Let it be about being present with each other, not performance.

A shared bath or shower ritual. Warm water can soothe sore joints and tired muscles. Gentle touch, soft music, candlelight, and uninterrupted conversation can create a deep connection without strain.

Snuggles and storytelling. Skin-to-skin contact releases oxytocin, the bonding hormone. Sharing a favorite memory, a made-up story, or even quiet closeness on a flare day can feel so intimate without placing expectations on the situation.

Elevated pillow talk. Turn the phones off and dim the lights. Talk about fantasies or how you felt loved this week. Words can be just as intimate as touch.

At the foundational level, intimacy with chronic illness is about staying connected when things don’t look the way they used to. It’s about reminding one another, over and over again, that desire doesn’t disappear just because our bodies change.

And please remember this, a critical element of the intimacy conversation: You are still worthy of closeness, pleasure, and being desired exactly as you are, right now.

If intimacy feels hard in this season, it doesn’t mean it’s gone from your life forever. It may just be asking to be met differently.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.