Your sex life shouldn’t be halted because of bad advice, embarrassed doctors, or a lack of knowledge.
Receiving an unexpected diagnosis can affect every aspect of your life, including your sex life.
There are so many misconceptions when the topics of chronic illness and sex converge, making it a potentially scary subject for anyone learning to live within their “new normal.”
I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) 2 weeks after my 30th birthday, and I had a plethora of questions on my mind, some of which involved my sex life.
Multiple sclerosis (MS) is a chronic condition in which a person’s nervous system attacks itself, creating lesions on the brain and spine, often damaging the nerve pathways. This can result in numbness, tingling, itching, nerve pain, spasticity, mobility changes, and many other symptoms.
As a result, I knew my sex life was going to change, but I had no idea how.
It took some time, but I eventually discovered it was possible to have a satisfying sex life while living with a chronic illness and disability.
It might seem obvious to anyone who’s living with a lifelong condition or disability that sex is often an important aspect of our lives. However, when it comes to seeking medical advice following a life altering diagnosis, sex regularly goes unmentioned.
Research shows that many healthcare providers have limited knowledge of and confidence in talking about sexuality and chronic illness and disability. They’re also commonly really uncomfortable bringing it up with patients.
Meanwhile, research is limited on sexual dysfunction related to chronic illness. It makes sense, then, that some medical professionals may be uncomfortable addressing the subject with patients.
However, this lackluster response can sadly make those of us with chronic conditions feel as though we’re asking too much, or that the support we need just isn’t available.
If, like me, you’ve broached the subject of sex with a medical professional, it’s likely that you’ve also had mixed results.
Some suggestions have been helpful, from “use more lube” to “have sex earlier in the day to avoid fatigue.”
Others have made me question whether my sex life is important, and more specifically, if anyone else believes that my sex life is worth saving.
However, it’s crucial to find the right healthcare provider who understands the unique needs of someone facing a difficult diagnosis or lifelong condition.
It’s impossible to explore all of the ways that a chronic illness or disability might affect a person’s sex life, especially as each individual will be affected differently.
After finding out that I have MS, my sex life changed, first for the worse, and then for the better.
I had a major relapse that affected both of my legs and caused numbness from the waist down. This made sex an uncomfortable experience for several months afterwards, and I lost the ability to feel orgasms.
There were times I wondered whether I’d ever experience an orgasm again. Sex itself felt strange and made me tingle all over, not in a good way.
My body has also been affected by pain, mobility changes, and fatigue, but I’ve persevered in spite of any difficulties because I didn’t want to give up on having a sex life.
While I’ve spoken to some wonderfully supportive doctors and medical professionals, it’s also been suggested that companionship is more important in a relationship and that I should make the most of what I have, even if it doesn’t involve sex.
The implication, of course, was that sex was somehow less important to a person with an incurable illness, but that’s simply not the case.
When it comes to disability, people often speak of accessibility, so why shouldn’t the same parameters extend to having sex?
Here are some of the things that might make sex more accessible (and more fun!) if you’re living with a chronic illness.
Communication is key
While it might sound obvious, communication is key in any relationship.
“Some people believe that if two people love each other, sexual activities should automatically feel mutually wonderful and satisfying,” says Lee Phillips, EdD, LICSW, a licensed clinical psychotherapist and AASECT certified sex therapist.
“The number of sexual problems reported by people with chronic illness demonstrates all too conclusively that there is nothing automatic about sex,” says Phillips.
It’s all too easy to feel frustrated when sex and intimacy don’t magically happen the way we want it to.
When one or both partners in a relationship have a disability or chronic illness, it’s more important than ever to talk through any issues or concerns there might be.
For instance, sometimes my condition affects my ability to physically feel anything during penetrative sex, and I always let my partner know about any new symptoms or changes I’m experiencing.
“Sexual communication is critical because it can address sexual likes and dislikes, turn-ons and turn-offs, sexual needs and desires, sexual fears and concerns, past positive sexual experiences, and past negative sexual experiences,” says Phillips. “It is the key ingredient for enhancing a sex life.”
Explore intimacy and your ‘new normal’
While not everyone will be interested in therapy after receiving a surprising medical diagnosis or adjusting to life with a disability, finding a therapist who understands your needs could make all the difference.
“I always call therapy the safe container,” says Phillips, who hosts the Sex & Chronic Illness podcast.
“It is the place where people who are chronically ill feel safe and it is a place where they are not judged. It is the place where they can learn the skills in using their voice. This helps them become more aware and assertive in expressing their sexuality.”
If you’ve recently received a diagnosis, then it’s possible you’re feeling shell-shocked and lacking in confidence.
This is why considering therapy and finding a specialized therapist could be particularly helpful, especially if you’re dealing with relationships, intimacy, and sex.
“We have to realize that when so much changes in a person or a couple’s life due to chronic illness, a satisfying sex life can be one way to feel healthy and normal,” says Phillips.
Whether you’ve always hoped to explore your sexuality in more depth, or you’re looking to spice things up post-diagnosis, it’s always possible to create more fun, excitement, and surprises in your sex life.
“When living with a chronic illness, sex can be a powerful source for comfort, pleasure, and intimacy,” Phillips says. “Therefore, I always say that you have to get curious about your partner and get creative with your sex. People start to look at this as a new sexual adventure because so much has changed due to chronic illness.”
If, like me, your physical sensations have changed with your chronic illness, you might need to try new positions and techniques to achieve orgasm or feel good during sex.
If you can, try viewing this as a positive thing rather than a burden and an opportunity to create greater intimacy with a partner.
Depending on your illness or disability, you may not be able to restore sensation to certain part of your body. That doesn’t mean pleasure isn’t possible.
“Focus should be on stimulation to the chosen area without any plans of moving to any other areas or having sexual intercourse,” says Phillips. “These exercises place the emphasis on intimacy and pleasure over the goal of performance and orgasm.”
If your body has changed because of a chronic condition or disability, then using toys or props might help. (If you have regularly bemoaned the lack of fully accessible sex toys, a new company, Handi, might soon have the answer.)
Don’t give up if you don’t want to
Perhaps the most important thing to remember is that the choice of whether to have a sex life is yours and yours alone.
Whether you’re working on your orgasm solo (like I needed to do), or you’re embracing sexual intimacy with another person, your sex life is yours.
It shouldn’t be halted because of bad advice, embarrassed doctors, or a lack of knowledge.
Amy Mackelden is the weekend editor at Harper’s BAZAAR, and her bylines include Cosmopolitan, Marie Claire, ELLE, The Independent, Nicki Swift, Bustle, xoJane, and HelloGiggles. She’s written about health for MS Society, MS Trust, The Checkup, The Paper Gown, Folks, HelloFlo, Greatist, and Byrdie. She has an unhealthy obsession with the Saw movies and previously spent all her money on Kylie Cosmetics. Find her on Instagram.