When it comes to being chronically ill, there is a lot of mythology around what it means to be sick. But it's important to acknowledge that sex during chronic illness does happen — roughly 40 percent of the population living with a chronic illness is not living in an intimacy-free bubble. Whether or not you've ever thought about it, people with cancer, cystic fibrosis (a disorder that damages the lungs, digestive system, and other organs), endometriosis, heart disease, and diabetes still have sex. Sex during chronic illness comes with a particular set of circumstances, but it's not necessarily dangerous or to be avoided. Instead, it's important to educate yourself regarding the facts, to avoid spreading any misconceptions in the future.
There is no one definition of a chronic illnesses, but they're generally understood to be long-lasting and largely incurable conditions or diseases that impact people's lives. But, despite sometimes insurmountable obstacles and constant doctor visits, life goes on, and love and sex don't go away. Love Coach and Host of Ready for Love Radio Nikki Leigh tells Bustle that intimacy is just a part of the equation. "With a chronic illness, every aspect of your life will change to some degree ... Your sex life is no different," Leigh says. But it's not something to be ignored.
And there's no better way to start the conversation than throwing some unhelpful myths in the trash. Here are 10 myths about sex with chronic illness that need to be busted ASAP.
Myth #1: People With Chronic Illnesses Don't Want Sex
Probably the biggest myth about sex and chronic illness? That they're mutually exclusive. Sex experts and chronically ill people agree that the zero libido myth has got to go. "As a society we often think of chronically ill people, especially those who are older, as asexual," Ren Grabert, M.Ed., Sex Educator, tells Bustle. But really, those two factors have very little in common.
Dr. Dawn Michael, Certified Clinical Sexologist & Sexuality Counselor, tells Bustle that the biggest myth around sex and chronic illness is that a person who has chronic illness does not want to engage in sexual activities at all. Chronic illness can range from asthma to eating disorders, and although some symptoms and medications can lower libido, the idea that people with chronic illnesses have no sex drive whatsoever is simply not true.
"People who are chronically ill or disabled experience the same feelings and desires about sex as everyone else," Rachael Rose, sex educator, speaker, and founder of the award-winning blog Hedonish, tells Bustle.
No sex drive? That often has little to do with a diagnosis. Low libido is caused by a wide variety of factors, including low testosterone levels, taking antidepressants, and even a lack of vitamin D. And while we're at it, asexuality is also real, and there's a ton of myths to be busted on that subject alone.
Myth #2: Sex Always Means Penetration
Fingers crossed, soon we'll be past the era where the notion of sex was a one-and-done thing revolving solely around penetration, but this mythology still holds true for people with chronic illnesses. Dr. Michael says that it's a myth that the word "sex" means penetration; there are other ways to have sexual pleasure besides this. Plus, redefining sex is a pretty sexy pursuit, regardless of whether you are dealing with an illness.
"[For chronically ill people, creativity] can be a great way to maintain the closeness and intimacy with your partner during the recovery time when your doctor recommends to avoid more strenuous sexual activity," Leigh says. Not all people with a chronic illness need to avoid penetrative sex, but thinking outside the box, like trying a new toy or exploring mutual masturbation, is good for everyone.
Myth #3: Sex While Having A Chronic Illness Is Not Something To Talk About
According to the Center For Disease Control And Prevention, 117 million adults in the U.S. have at least one chronic illness. So why isn't this something being discussed more? And more to that point, communication among couples where one partner has a chronic illness is essential for a healthy sex life.
"Communication is paramount," says Dr. Michael. If your partner has a chronic illness, be respectful, and be open to discussing what will make them feel most comfortable. "Don't be afraid to ask the person with the chronic illness to be intimate or talk it out with them coming up with ideas to adjust to sex, positions, times of the day," Dr. Michael says.
If you are the chronically ill person in your relationship, it can seem intimidating to discuss your sexual needs with a partner, but speaking up for yourself is essential, and can be liberating. "It can be really scary telling someone new that you can't have sex in certain positions due to joint pain or that you're incontinent due to irritable bowel syndrome (IBD) or Crohn's Disease and that it's possible to encounter poop during sex as a result," Grabert says. But avoiding the topic will only make it worse. "It can be even scarier when you have no idea how the person you're telling will react. I like to remind clients and students that we all have to make big disclosures around sex," says Grabert.
If you are feeling nervous, you can also let your partner know, so they understand the gravity of your vulnerability in the moment. "I find prefacing the disclosure by saying that you're nervous about the other person's reaction can cue them in to be more thoughtful in their response," says Grabert. And if you're ill and your partner responds poorly to your needs? "That's an important data point for you to consider," says Grabert. Is that really the kind of person you want to be with?
Myth #4: Chronically Ill People Are "Fragile"
Another myth? That chronically people are too fragile for sex, says Grabert.
"Sure, some of us have days where we don't feel like it (and that may or may not be due to feeling too sick that day), but that goes for pretty much everyone," Grabert says. Again, having a chronic illness doesn't make someone that much different, so keeping an open line of communication in a relationship where one partner has a chronic illness is key to find out when sex is on the menu.
Myth #5: It's Only An Issue For New Relationships
Chronic illness can happen at any time. Understanding sex and chronic illness is not just for people who are looking for new partners, since you or your partner could experience a diagnosis at any point in your lives.
When a diagnosis does happen, in long-term relationships, issues surrounding sex can happen when one partner doesn't understand what the other needs, or what will make them comfortable, says Dr. Michael. "The comment I get most from the person who is not chronically is that they are afraid to hurt the person or they are not enjoying the experience so they don't initiate," Dr. Michael says. "This is a very common problem with couples that have been together for awhile and one person get sick, they no longer have the same routine or like the same things they did before."
If you're a couple struggling with a new diagnosis, going to a relationship therapist, coach, or expert can help. "I work with the couple to talk about how they can help each other and most important, experience pleasure once again with each other," says Dr. Michael. "Being able to bring pleasure to a person with a chronic illness ... is something that gets lost and the couple often times needs help getting it back with different techniques." With some assistance, you'll be back on track soon.
Myth #6: It's Not Appropriate To Discuss With Your Doctor
Despite the fact that sex and illness might not directly intersect, it's always important to have open and honest communication with your doctor if you are suffering from a chronic illness.
It might be intimidating, but it's important. "Having a chronic illness(es) means that sexual concerns often need to be discussed with your healthcare provider," says Rose. And it's possible you'll need to do some major self-advocating. "I know that many doctors do not want to discuss your sex life, but this is important so push them. You need to know if its safe to have sex," says Leigh.
If your doctor doesn't address your concerns regarding sex, it might be time to find a new one. "Unfortunately, many healthcare professionals also believe that sex is not as high of a priority to those of us living with chronic health issues, and our concerns surrounding sex are frequently dismissed or ignored," Rose says. People with chronic illnesses have a right not to have that happen.
Once you find a good fit, Leigh says it's critical to have an honest conversation with your doctor. Everyone deserves to be heard.
Myth #7: People With Chronic Illnesses Don't Deserve To Have Sex
People with a diagnosis deserve a fulfilling sex life, just like the rest of the population.
"I think some people ... feel that a person with a chronic illness, cannot or should not participate to their fullest potential in a healthy intimate fulfilling sex life. And that is such a shame," Leigh says.
If you or your partner is ill and not exploring pleasure to its full extent, try reframing the narrative. Talking openly about each partner's desires and how to make sex a possibility is a way to start. Speaking with a couple's therapist is another avenue to explore to help clear any misconceptions, and discuss strategies that will work for both partners.
Myth #8: Sex Has To Be Bland
The myth of bland sex goes hand-in-hand with the narrative of fragility. And guess what? It's still not true.
Leigh says there are three great ways in particular to explore the not-boring side of sex with a chronic illness. "One, pay attention to your partner and be aware of their reactions. Two, be creative and find ways to do things [that are] different and more enjoyable for both of you and most important. Three, have fun!" Leigh says.
Myth #9: Chronically Ill People Have All The Answers
Communication isn't a one-way street, and that's especially true with chronic illnesses. "[Another myth is] that we are always able to describe what we need, since we're so familiar with our bodies due to our conditions," says Grabet. But sex is about communication between two (or more) people, not one person holding all the responsibility.
Plus, it is important to take into account that someone who has a chronic illness may be experiencing brain fog, which can make communication more difficult. Everything from chemotherapy to chronic pain can make your brain function feel slow and confused. "[Brain fog] can make effective communication difficult, if not impossible sometimes. This is really important to know in regards to consent. Deciding on non-verbal cues ahead of time is helpful," says Grabert. Find a system that works for both people so that each partner feels comfortable at all times.
Myth #10: Sex Is Just Different For People With Chronic Illnesses
The final myth about sex and chronic illness is that it's completely different than sex free of chronic illness. That's just not the case.
Everyone should communicate openly, ensure that consent was expressed, and then enjoy themselves. "There needs to be more discussion about how to have a hot, pleasurable sex life with chronic illness/disability, and not just amongst those who are already chronically ill/disabled," says Grabert. Opening the conversation is just the start.
So what is sex with chronic illness all about? Maybe some of the nitty-gritty might be different with a diagnosis, but the takeaways are the same. There's a lot to learn from how people with chronic illnesses enjoy sex; it's all about open communication, exploration, and honesty.