Chronic Illness Throws a Real Wrench in a Lady’s Sex Life

If sex were purely about the physical, I wouldn’t be having it.

Gillian Sisley
Mar 2 · 6 min read
Photo by Fa Barboza on Unsplash

Last year, I was diagnosed with endometriosis. Endometriosis is a chronic condition that causes the build-up of the lining within a woman’s reproductive tract and results in painful flair-ups, scar tissue, cysts and other unpleasant things.

I’ve likely had this condition for many years, ever since entering puberty, but it’s only been diagnosed recently. And actually, it was only diagnosed because I had a surgeon inside my body removing a massive cyst from my ovary last summer. Once she was in there and could have a look around, she was able to diagnose me.

The more I talk to other people who live with chronic conditions, the more I’m realizing that in some ways I’m one of the luckier cases. For most people, just getting diagnosed is half the battle. Many will go from doctor to doctor over a span of many years trying to get a diagnosis for the chronic pain and struggles they’re suffering.

That said, the thing that we rarely talk about when we address chronic conditions is how these conditions affect our interpersonal relationships, in particular our sex lives.

I am no exception to this rule. And I know many other women who fall under that category as well.

For some women, sex is painful and yet we still have it.

Jessica A wrote a fantastic piece about her transparent experience living with Interstitial Cystitis, which was the inspiration for writing this article. You can find the article below:

In her piece, she details how sex is actually uncomfortable at times during the act, and there’s about a 50% chance that she will have some sort of painful flair-up afterwards.

She talked about how those realities have complicated sex with her partners in her life, but it doesn’t stop her from having sex.

I resonated with this story so much, because I too have a chronic condition that causes unpleasant side effects associated with sex. Ever since my diagnosis and the insertion of my Mirena IUD 8 months ago, sex has become more complicated for my husband and I.

During, it’s pleasurable and fine. But about 12–18 hours later, I suffer the consequences of it — severe cramping and bleeding are to follow, like clockwork, every single time.

And if we have sex two nights in a row? Oh baby, Day 3 is going to be a day-on-the-couch-with-the-pain-killers-within-close-reach kind of day.

Brutal, to say the least. And not exactly something that spices up a sex life.

So if it’s painful, why bother?

My cousin and fellow writer is writing a work in progress (WIP) romance novel where her main character suffers from the same chronic disease as my cousin, fibromyalgia.

If you don’t know what fibromyalgia is, it’s “a widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues”. Researchers believe that it heightens pain receptors and affects how the brain and spinal cord process pain.

While discussing our novels, I suggested that in one of the sex scenes in her novel, she make a point of having the main characters accommodate for the lead female’s fibromyalgia. Because like a lot of chronic conditions, fibromyalgia can also get in the way of one sex life, and can make certain positions or sex in any capacity extremely difficult.

I encouraged her to write a realistic but still sexy take on a couple navigating an accommodating chronic illness in their sex life without losing the foundational spark or chemistry. She and I both know as two people with chronic conditions that affect our sex lives, there is virtually zero representation in books or in the media of the obstacles with sex and a chronic condition.

What a great opportunity to create some representation that many readers would resonate with.

Some might be reading this article and asking themselves: “If it’s painful, why do it at all?”. That question even more so highlights the need for us to have more representation of those living with chronic conditions in mainstream media, and what motivates us in our lives when pain is a consistent and regular reality.

I can’t speak for everyone, but I can offer you my perspective:

At least not in my marriage, not with my partner. And being realistic as well, sex doesn’t have to include penetration (which is often the very thing that causes our chronic flair-ups and discomfort).

Sure, the physical is great, but I show up for the intimacy and emotional connection that comes along with sex. The physical pleasure is a plus, but it’s not the be-all-and-end-all for me.

And that’s why, despite the pain that will follow, sex is still worth it, within reason.

In these cases, consent matters more than ever.

That isn’t to say that there are times when consent matters less — my point is that there are a variety of reasons why someone might deny consent. And they aren’t always, ‘because I just don’t feel like having sex’.

I’ll be the first to admit that there are times that I could go for a good romp in the sack — but I may then weigh whether or not it’s worth the cramping the next day, and decide against it.

It’s not romantic or sexy, but truthfully I’ll be less likely to want to have intercourse if I know I have something important or somewhere to be the next day.

Because it f*cking sucks to be in excruciating pain and on pain killers anywhere other than your home. It’s uncomfortable and miserable regardless, but to have to be out in the world pretending everything’s fine? No thanks.

I’m lucky enough to work from home and even work for myself, but many of don’t have that luxury.

Final word.

As if there weren’t enough things in the world complicating our sex lives these days, for those with chronic conditions that can make sex unpleasant at times or even painful, the obstacles are just increased.

Any reason for why someone wouldn’t want to have sex is valid. And in those cases, it’s our job as partners to be empathetic and understanding when the person we’re with expresses their lack of consent for whatever reason.

Not wanting to deal with the unpleasant aftermath of having sex, whether it be due to pain or discomfort or any other reason, is a valid reason and should be entirely and completely respected.

Don’t tell your partner to just suck it up. Don’t try to convince or guilt your partner into going along with it anyways, fully knowing that they’re likely to experience pain afterwards (pain that you, notably, don’t have to deal with yourself).

How can you best support your partner suffering from a chronic condition?

If this is you, I hope this piece offers some insight into how complicated the decision-making process can be for whether or not to be intimate with another person.

And if you do have a partner who suffers from this sort of condition, take it upon yourself to do the research. Do a Google search, read some articles, ask particular poignant questions to your partner about the unique details of their condition, how it affects them and what you was a partner can do to help.

It can feel like a condition like this is a burden on our partner, and something that can routinely sabotage the intimacy or connection we share with another human being. Don’t wait for your partner with their condition to detail everything to you, take initiative and ask questions yourself.

Be empathetic, thoughtful and understanding. Most of the time, just listen. Appreciate that it’s unfair and unfortunate that anyone should feel pain or discomfort during something that’s supposed to be a natural and pleasurable biological human experience. It may not be easy to be the partner of someone with a condition such as this, but I can guarantee it’s a lot harder to live with it. And none of us ask for it to begin with.

So: here’s to embracing the human realities of sexual intimacy.
Here’s to recognizing the unsexy moments that will happen.
Here’s to the conversations about navigating chronic disease and a sex life that don’t make it into the movies.
Here’s to giving each other permission to be open in a safe space about how we’re feeling and what we’re comfortable doing.

There are a lot of other ways to be intimate with someone beyond intercourse.

Fearless She Wrote

This is a space to empower differences, tell our stories…

Gillian Sisley

Written by

Online solopreneur. Tea drinker. Committed optimist. I write about womanhood, writing & entrepreneurship. Never miss a single beat 👉

Fearless She Wrote

This is a space to empower differences, tell our stories, and share our lives together. We will not be silenced. We will be fearless. And we will write.

Gillian Sisley

Written by

Online solopreneur. Tea drinker. Committed optimist. I write about womanhood, writing & entrepreneurship. Never miss a single beat 👉

Fearless She Wrote

This is a space to empower differences, tell our stories, and share our lives together. We will not be silenced. We will be fearless. And we will write.

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