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Gray Matters: Stay in the Moment with Multiple Sclerosis and Plan for the Future

Here's how to live a good life with multiple sclerosis and manage your MS symptoms.

Author: Trish Giramma

Published: August 14, 2024

Key Points

Multiple sclerosis can place strain on even long-term relationships, never mind trying to start a new one.
It's not easy to navigate the impact of multiple sclerosis on physical intimacy, even with an established partner.
Communication needs to be intentional for both individuals, especially when the discussion turns to sex—and sex should definitely be discussed.

It's evening, and I'm readying myself for bed. In my hand are my three evening medications:

Aubagio (brand name for Teriflunomide), my current disease-modifying therapy (DMT).
Amantadine, a drug developed to treat the symptoms of Parkinson's disease but is also effective in preventing flu symptoms and relieving fatigue in MS patients.
Zoloft (brand name for sertraline) for anxiety.

I'm tired, but it's a normal level of tiredness, not the bone-crushing fatigue I sometimes feel when my MS is active. I've had no other symptoms of relapse since my diagnosis in 2019.

Of course, there was that day last summer when I had some numbness in my right forearm. The neurologist said that was a transient reaction to the heat wave we were currently experiencing, and it lasted for less than 24 hours, so it wasn't considered a relapse.

Who am I to quibble?

The neurologist also says that if I don't have any more relapses, I can stop taking my DMS at age 65, which isn't all that far off.

That's how people with multiple sclerosis live. Managing our disease one day at a time, but always with one eye on the future and keeping vigilant for the "what ifs?"

Choosing MS Treatment

We all deal with our MS in our own way, according to the progression of our disease, our beliefs, our situations and our attitudes.

Loretta Gentile, of Hawley, Pennsylvania, can no longer work or drive because of the exhaustion that's so common in people with multiple sclerosis. Beyond that, she tries not to think about it too much.

"I don't want to admit I have this. I don't dwell on it," she said. "People tell me to go on disability but that would be admitting I have it."

For the first time, she is considering taking medication to control her symptoms, which she resisted for so long because of the potential side effects.

Denise Peterson, of Naples, Florida, has no choice but to think about her multiple sclerosis. She uses a cane to get around because of an advanced case of drop foot. This MS-related condition makes it difficult to lift the front part of the foot, causing it to drag on the ground. She doesn't think she's too far from needing a scooter, but her attitude doesn't seem to flag.

"I'm a glass-half-full person. Not only is it half full, but it's also refillable. That's how I deal with it. I try to stay positive," she said but admits it's not always easy.

"It's a daily effort to stay out of negative thoughts. If I end up in a wheelchair or scooter, so be it. That will be the next step and the next adventure," Peterson said.

Dating with MS and talking to your partner

For Peterson, one of those adventures may—or may not be—a relationship.

Multiple sclerosis can place strain on even the longest-term relationships, never mind trying to start a new one.

"I was in a long-distance relationship when I received the diagnosis, and we did have sex for a couple of years after I was diagnosed," she said. "It didn't affect me at all, except I was clumsy. I hadn't told him I had MS because I was nervous, but it did not affect feeling or performance."

Peterson said she didn't tell her then-partner because she was newly diagnosed, and the relationship was developing.

"He already knew I was an alcoholic," Peterson said, who has been in recovery since 2010. "I guess I felt like I didn't want to add one more thing. It was new for me, and I didn't know if I needed to tell him."

The relationship ended in 2012, and though she is not completely opposed to the idea of a new relationship, she has reservations.

"I wouldn't want anyone to think they have to take care of me," she said. "I don't know if I would be able to perform sexually, so I don't know if I would be a satisfying partner in that way."

It's not easy to navigate the impact of multiple sclerosis on physical intimacy with an established partner.

Introducing the topic in a new relationship is even more fraught.

"I've discussed disclosure with clients, and it's very complicated," said Madelyn Esposito, LPC, NCC, CST, an AASECT-certified sex therapist and mental health technician at the School of Medicine and Public Health at the University of Wisconsin.

"They may not want to disclose on the first date but they may decide that they want to, and I help them figure that out and prepare for the discussion. And most importantly, we talk about when they wouldn't want to disclose," Esposito said.

Once a client decides they can trust the person, they must also present the information in a useful and accurate way, according to Esposito.

"I ask them what they want the person to know," she said. "What myth about MS they would want to clarify for that person."

Then she role-plays how they would disclose the information to their partner.

"Communication really needs to be intentional for both individuals, especially when the discussion turns to sex—and sex should be discussed," Esposito said. "There's this myth about spontaneous sex that I'm pushing back against. Before going on a date, we shower and do other things that dispute the idea of spontaneous sex."

Busting that myth, she added, is especially important for people with MS whose bodies may not respond in conventional ways to stimulation and for whom some touching and sexual acts can be painful.

Esposito advocates for intentional sex, which includes expanding the definition of "sex" from penetration to other pleasurable sensations. She uses a tool known as a body map assessment to help clients identify for their partners which parts of their bodies are receptive to touch and which parts are not.

"I have clients draw an outline of a body and use green, yellow, and red pencils to indicate which parts of their bodies are open to touch and which should be avoided at that moment," she said.

"Because that could change in an hour, day or month. I'm trying to help them create more of a language around how they communicate about what works for them."

Putting it all in perspective

Living with MS is a bit of a waiting game. Especially for those of us forced to play, manage our symptoms, consider the side effects of powerful and expensive medications, and chart our progression while waiting for the next big breakthrough in treatment.

In the process, we try to glean insight and wisdom where we can.

"Having MS taught me a lot of things—patience, tolerance and understanding that all of us are suffering from an invisible disease," Peterson said. "I’m much more tolerant when people are in a bad mood because who knows what’s going on.”

Part of Peterson’s care arsenal is a meditation practice she developed after her diagnosis. She said it helps with stress and acceptance.

“I get frustrated because I can’t do all the things I want to, and I go back to my breath and remember that I can, and I will and I’m going to just keep going.”