The Threesome You Don’t Want: Sex, Relationships, and Chronic Illness.

Brace yourself for the icy cold, unsexy truth of what really happens when you contract a chronic illness.

Yes, I’m talking about sex, and sometimes the lack thereof.

This is a subject I can speak confidently on since I was diagnosed with a rare neurological disease four-plus years ago. Not only did I have to fight to retain what was left of my physical health; my husband and I had to learn how to fight together for our sex life.

But how the heck would I do that when I was so dang exhausted?

Physical intimacy is a huge part of being a person. We need to surrender to loving each other and expressing ourselves to give and receive the closeness we require. We need affection. We need security. We need release. We need to give our hearts away and have them held lovingly by the person we cherish most in the world. Sometimes we just need a rousing romp with less emotional attachment…because sex is a blast!

When you are hit with a life-changing disease in the midst of a relationship you waited all your life for, a relationship so real and worth every peak and valley, it pisses you off as it guts your heart. Suddenly, you will obsess over your worst fear…am I good enough in this relationship? Was I ever?

Past behaviors haunt you. Meanwhile, you wish and hope and pray and soak up all the white light that you can that your partner will believe you are worthy enough to stay with…despite the new physical, emotional and mental challenges. Despite the fact, that in retrospect it seems like you lived your life in a safety net.

Oh, the joy of the functioning “normal” body. You tackle the mundane aches and pains and occasional virus. But you can still enjoy a healthy sex life. You can still participate, control stamina and even the desire to be intimate. And when you plan to do so, your aims aren’t likely disrupted by a relentless disease that doesn’t care if you ever make love again.

I can hear it, the cruel jeering, the voice I’ve given my disease, transverse myelitis, a mad mix of snark and pep: “That’s on you, sister. We have other plans like figuring out if our legs are strong enough to walk Target. And you know what? I think no, better plan to plunk your ass in your wheelchair.”

But even when we are sick, we still have needs, and we have to talk about those needs as we also have to talk about our partner’s needs. No, I am not 100 percent healthy,  but I know when I do and don’t want to knock boots. And believe me, I still have moments when that’s all I think about! Being disabled or sick doesn’t eradicate your sex drive! In fact, it can be frustrating and might result in you feeling dammed up from having to go without…dammit.

But, I also have a responsibility to communicate with my husband about what he wants. And I am dedicated to hearing and understanding that he is sensitive and doesn’t want to seem selfish and assume my emotions. I have to let him know there are things I can still do in bed even if I’m not up for intercourse. Because when your spouse is looking at you with sad eyes over your struggles and their heart is cracking as you stumble along holding onto the walls, or when you have to wait a minute to see if you can stand up, you can bet they are and aren’t thinking about sex.

What do I mean by this?

The desire to be intimate even in the face of physical hardships doesn’t change, and when you have been sick long enough, it becomes a new normal. Meaning you can feel randy even in inopportune moments. To me, that is not rude or inconsiderate. It is instinctual to have sexual urges.

Our partners first love us and want the best for us (unless you’re with an asshole, in which case, get out), but they also have needs that don’t change and that they shouldn’t be ashamed of feeling. A healthy sex life and relationship means the gloves come off.

The conversation is uncensored, and you ask for what you need when you need it. You ask for what you want; you answer honestly when asked what you can provide, and you make compromises to support each other in ensuring both of you will be satisfied physically and emotionally.

Because despite how anyone is feeling, sex should not be leveraged to incite guilt, shame, or eventual collapse into a decision that is not wholeheartedly welcomed. No one has the right to do that to another.

If your partner can never have traditional intercourse again, then that is the way it is as long as you are committed to each other. There are other options you can explore together. But no one has the right to chastise another for what they can’t control. This does not engender the urge to share our most private secrets and fantasies. It squashes them. It makes a person quiet and withdrawn…and if they have been harangued to participate sexually when they are not feeling well enough, furious. Doing this is not the way to go!

Communication is paramount whether you and/or your partner have a long-term illness, injury, or disability. Our intimate relationship is stronger because our connection transcends sexual acts and has a greater and deeper meaning. And isn’t this what we want to strive for anyway? How odd that a diagnosis could force us to find the missing piece to a healthy sex life.

Planning sex is now mandatory in our relationship.

We pick a day and then we both know we are responsible not to fuck up the plans to get to the ahem…shagging. That means we go to bed at a decent hour. We don’t eat anything that will trigger untenable symptoms on that day or in the days before if applicable. My nervous system is shot and gluten is a one-way ticket to bedville, party of one, express track to sleepytown with the side effect of burning limbs and vertigo.

We have to give a shit about the commitment we’ve made to each other. And we have to stick to the plan because we both believe it is more important than any impulsive reaction. We pledge to do this together as a way to take care of our long-term goals. Nurturing the day-to-day intimacies means that we can go forward with a history of sexual dedication.

It can feel weird getting so logistical about sex, but when you are sick, you have to be logistical about everything. We’re always asking questions like: What events can we attend? How big is that store we are going into? How many days is that trip? How many breaks are there during this seminar? What foods are they serving and do we need to bring something to eat, so I don’t flare and lose feeling in my legs?

Why, if sex is a vital part of a relationship, would you not put the same thought and care into laying out the details to take care of it as you would in any other part of your relationship?

But how do you even broach the topic that you want and need to be intimate? I love examples so here are a few (and remember it is on us to take responsibility for our communication). We know, in our marriage, if we have not been clear in expressing our desires that it is not the other’s onus, but ours to clarify.

Here are some conversation starters:

I have enough time to prepare my body for sex on Saturday. Do you think we could plan it?
I need to have more sex with you, but I don’t know how to tell you, and I feel silly talking about it.
I love you. I need you. I miss you. I am okay physically to be intimate with you. This is what I need to do for myself before we can get started.

Or,

I love you. I need you. I miss you. I am not feeling the greatest, but I’m open to having sex, or just messing around and seeing where it goes 😉

I feel honored when our time together is respected and prioritized. I feel connected and understood and after showing extreme vulnerability in the face of illness, safe.

Sex is a human need as real as taking in air or nourishment.

It is physical nourishment.

Make your reservation. Immerse yourself in what you crave. Communicate. Get bold and sweaty. Repeat.

 

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