"I stopped pushing through sex for the sake of a partner's needs and learned to ride the rollercoaster of long-term chronic illness."

Hannah Shewan Stevens
May 14, 2021 @ 5:23 pm
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chronic fatigue syndrome and sex
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We all know the classic scene where an irritable housewife rejects a pleading husband for sex because she's just too damn tired. For people living with chronic fatigue—a symptom characterized by extreme tiredness and exhaustion—this is an everyday reality. Some of us really are too fatigued to have sex and this makes maintaining a healthy sexuality a minefield of flare-ups, broken relationships, and exhausting confusion.

The most well-known cause of chronic fatigue is Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), which can be triggered by conditions like glandular fever and hormone imbalances. According to an Institute of Medicine report, an estimated 836,000 to 2.5 million Americans are living with CFS/ME. However, as a symptom, chronic fatigue can impact any of the 133 million Americans living with an ongoing and incurable chronic disease and many of the one billion disabled people worldwide will wrestle with chronic fatigue as a symptom of their conditions.

Thanks to chronic fatigue, my body cannot always fulfill the fantasies of my brain. I live with a complex combination of chronic illnesses, including fibromyalgia, localized scleroderma, and ulcerative colitis, and one of the main side effects is chronic fatigue. Fatigue is not tiredness after a long day or a bad bout of flu—it's soul-crushing exhaustion that makes each limb feel like it's inlaid with lead. On a bad fatigue day, the tiniest of movements feels like climbing a mountain, and simply getting out of bed inflicts nausea and dizziness.

I have been devastated by my body demanding breaks midway through sex, explaining sex and fatigue to new partners, and feeling like my body was simply not made to have sex. To combat this, I stopped pushing through sex for the sake of a partner's needs and learned to ride the rollercoaster of long-term chronic illness.

Balancing sex and chronic fatigue can feel like an impossible task when our bodies are incapable of enacting our desires, however, fatigue is not a death sentence for pleasure. Read on to understand how to find that sweet spot between chronic fatigue and sexual satisfaction.

1. Use self-pleasure to find your starting point

After struggling to balance partnered sex with fatigue, masturbation and sensual touch was the most accessible route to re-engage with sex. It helped me understand how my fatigued body worked solo before intertwining my physical needs with shared desire. "Learning to explore by yourself is very beneficial," sexologist Ness Cooper tells HelloGiggles. "Explore the positions that you would love to do with a partner when you're doing self-pleasure and see how they work for your body, rather than just sticking to the traditional on your back or on your front."

There are additional tools that can help with sex positions for those of us who are too fatigued for the wild ones. A sex position chair—like this one—can help by creating kinetic energy for you, which will alleviate fatigue.

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2. Figure out how your body responds to orgasm

Everyone's body needs to be finely tuned to its individual needs and climaxing with chronic fatigue is no different. Cooper explains, "I have found some people with chronic fatigue, once they are able to reach orgasm, they get a massive burst of energy and then others, they have the reverse; they will hit the fatigue barrier and then there'll be a bit more fatigue for a few days."

If achieving a full orgasm has a detrimental effect on your health, then experimenting with other forms of pleasure could be a gateway to sensuality, like massage, sensual touch, and experimenting with the senses. Overstimulation can be a problem for people with chronic fatigue because our bodies are particularly sensitive to sensations. That's why Cooper recommends trying out sensory deprivation. Using a blindfold or earplugs while your partner explores your body can alleviate overstimulation.

chronic fatigue syndrome and sex
Credit: Getty Images

3. Find your tools

For people living with chronic fatigue, gadgets and life hacks are an everyday necessity because they make ordinary tasks simpler for our exhausted bodies. Whether it's a support pillow, keeping an energy bar handy, or ensuring that there is something to hold onto if you are prone to passing out, figuring out the tools that enable your sex life to thrive will be transformative. Cooper adds, "It's always worth having a sports or electrolyte drink close by just in case. It might actually be the thing you've been needing to perk you up to enjoy that orgasm."

It's also important to consider sex toy purchases carefully. If a toy is too heavy or cumbersome, it could be more trouble than it's worth. Check the weight and measurements of any toy before you buy it.

4. Prepare ahead of time

Most of the sex in popular culture is impromptu—but when you have chronic fatigue, a little foresight helps ignite the passion. If you know that your body needs ample rest time before and after sexual activity, schedule specific times for potential sex. You do not have to follow through every time, but carving out hours for intimate explorations—with a partner or on your own—will make it easier to balance fatigue and pleasure.

5. Explain your symptoms to potential partners

One of the hardest parts of sex with chronic fatigue is explaining it to new partners. Due to fear of rejection, I have harmed myself by having sex that my body is not prepared for. "There's a phobia [for] anyone with a disability that as soon as they disclose it, they're just going to be told that they're not a sexual being, that they can't go and enjoy these things," says Cooper. No one is obligated to share their medical history; however, explaining how symptoms could affect sex potential partners protects us from pushing our bodies too far.

6. Acknowledge the grief and embrace your new body

Grief is inevitable when your body changes beyond recognition, so making time to process it and embrace your new lifestyle is essential. "We may not want these changes, but it's also okay that these changes are part of you," says Cooper. "I find once people have accepted that they have a disability, they can have a lot more control over their self-confidence, and also what activities they can and can't do."

Unresolved grief can wreak havoc on our self-esteem. For me, self-love felt impossible because my body transformed every tiny task into an intense negotiation between living and thriving, but embracing my new body has allowed pleasure and fatigue to coexist peacefully.