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On an episode of CBS’ The Talk this week, Dancing With the Stars judge Carrie Ann Inaba spoke about her experience with chronic fatigue syndrome (CFS)—and the 49-year-old dancer and choreographer admitted that this condition has had a serious impact on her sex drive.
“I’ve been through periods where it’s gone a little dry because of my energy,” she said on the show. “I just can’t do it…I want to, but I can’t. So sometimes, it’s not even about want. You want, but you can’t.”
However, Inaba managed to find the silver lining, calling this challenge “a blessing, because I found other ways to keep the relationship strong.”
According to the Mayo Clinic, CFS is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. While the fatigue may worsen with physical or mental activity, it will not improve with rest alone.
It may also be referred to as myalgic encephalomyelitis (ME)—where the abbreviation would be ME/CFS—and the CDC reports that an estimated 836,000 to 2.5 million Americans are dealing with the illness. But much is still unknown about the condition. In fact, as the CDC notes, most medical schools in the U.S. do not include ME/CFS as part of their physician training.
“It can be difficult to diagnose because many of the symptoms of CFS can overlap with symptoms of other conditions,” Jen Caudle, D.O. family physician and Associate Professor at Rowan University School of Osteopathic Medicine, tells SELF. “We hear 'CFS' and we tend to think, ‘They’re just tired.’ But it’s not just feeling tired—they may not have the ability to work or engage in social activities.”
She adds that patients may also experience extreme exhaustion after common activities (e.g. running errands), along with having difficulty sleeping, concentrating, and maintaining balance. “There’s a lot of different elements to this condition,” Dr. Caudle says. In 2015, the Institute of Medicine even proposed a new name, Systemic Exertion Intolerance Disease," because they feel it more accurately encapsulates what is going on,” she says.
Doctors may not dig deep enough to find that CFS is the root of their patients’ numerous ailments, which only adds confusion of the illness, Gordon Crozier, D.O. Medical Director of Crozier Clinic in Orlando, Florida who specializes in working patients with CFS, tells SELF. Plus, many other conditions need to be ruled out before determining that CFS is responsible for a patient's symptoms, including multiple sclerosis, mono, Lyme disease, lupus, and fibromyalgia.
Obviously extreme fatigue can make sex seem way less enticing, but there are other reasons why your sex drive could tank when you have CFS. Depression is a common side effect of this disorder, so many doctors will put their patients on antidepressants, Dr. Crozier says. Unfortunately, both depression and antidepressants have been associated with reduced sex drive.
If you're living with CFS and frustrated at your lack of libido, it may help to expand the way you and your partner think of intimacy and sex, Dr. Caudle says. And, spoilers, it includes a whole lot more than plain ol' penis-in-vagina intercourse—oral sex, mutual masturbation, and extended foreplay can all "count." Plus, non-sexual intimacy is just as important, which could include activities like sending each other selfies throughout the day, going on vacation together, or simply cuddling.
Because there's no cure for CFS, the goal of treatment is to manage your symptoms, which may take some time to get right. The first step is to get the right diagnosis, which might on its own provide some relief. From there, your doctor will tailor your treatment to your specific symptoms. If antidepressants are involved, it may be more than six weeks before you feel a noticeable difference. And even when you do start to feel better it's important not to push yourself too hard too quickly—and to give yourself permission to rest when you need it.
Related:
- 10 Health Issues That Can Make You So Damn Tired All the Time
- The Difference Between Chronic Fatigue Syndrome And Just Being Really Tired All The Time
- How My Husband and I Make Our Marriage Work, Even With Chronic Illness
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