Sex and intimacy are good for people with multiple sclerosis (MS), just as they are for anyone without the disease. And while fear of talking with a partner about possible sexual challenges created by MS is perfectly normal, there is help available to deal with potential problems.
That’s according to Kimberly Castelo, a marriage and family therapist who has lived with MS for 12 years. Castelo, a wife and mother, was the featured expert in a March 12 online Q&A forum on relationships and MS sponsored by the Multiple Sclerosis Association of America (MSAA).
While no specific studies link sex to fewer MS symptoms, Castelo wrote in response to a question on My MSAA Community — the organization’s peer-to-peer platform — “research shows that when people engage in loving, consensual touch, their pain, anxiety [and] stress decreased. There is also research that loving, consensual touch helps improve mood and overall outlook.”
Castelo’s webinar was the second in a series of four in March to mark Multiple Sclerosis Awareness Month. The first, led by Castelo, took place March 5, and was titled “Intimacy and Family Planning with MS.” The third one on March 18 was on “The Partnership of Care,” featuring MS nurse practitioner Megan Weigel.
The last in the series, “Ask Me Anything,” is scheduled for March 25. The Q&A’s special focus will be on care partner needs with licensed clinical social worker, therapist, and wellness educator Lara Krawchuk.
Castelo said MS patients should not worry excessively about sex. People in general, she said, “have a lot of shame around how much sex they are or are not having.” Many also struggle with intimacy and experience sexual dysfunction at some point.
“What I am hoping for is that people do not put pressure on themselves to have sex or not to have sex,” she said, adding that pressure “just kills a libido.”
Instead, they should focus on “connection and pleasure, and allow themselves to define what that looks like.”
Don’t keep feelings inside
MS often makes people depressed and uninterested in intimacy. Castelo suggested that partners use things like playfulness, cuddling, and watching movies together to help create desire and intimacy. Meanwhile, a sex therapist may be able to help with the common problem of having difficulty climaxing.
Patients taking a selective serotonin reuptake inhibitor — a class of drugs used to treat depression — should check with their doctor to make sure the medication isn’t lowering their libido.
Those with bowel issues may find that a neurologist or urologist can prescribe helpful medications, while therapists might help overcome anxieties surrounding discussions of the topic.
Castelo said that letting partners know how they feel also can reduce stress and encourage closeness.
“It is totally normal to feel scared to share your feelings,” she said. “Really, the best way to help that feeling is to share how you are feeling with your loved ones — even telling them, ‘I am scared to share this because I feel I will be a burden.’”
She also recommended the book “Hold Me Tight” by clinical psychologist Sue Johnson, and Hold Me Tight workshops that help couples learn to communicate.
Partners of MS patients also may face sexual challenges, Castelo said in response to a question.
How to talk about MS
“One main concern I hear is that it is difficult to be in the caregiver role and also the lover role,” she said. “Those two hats can look and feel very different, so getting help on how to manage those feelings from a sex and couples’ therapist would be very helpful.”
Responding to a question about when an MS patient should tell a partner in a new relationship that he or she has MS, Castelo said it’s totally an individual choice.
“It is really important to know that ‘your MS story’ is yours, and you are allowed to share or not share it at any time,” she said. “Taking your time to share your MS story is totally OK. It is also totally OK to be very open with your MS story.”
How does one start a conversation about MS in a dating situation?
“I am always for being more overt in my communication,” she said in response to a question on that topic. “So if I am unsure on how to start a conversation, I say, ‘I am not sure how to start this conversation, but there is something I want to share with you about myself.’ Usually when you begin statements in that manner, you invite the other person to be understanding and supportive.”
Another participant said her adult son is in denial about her illness and doesn’t want to hear about it.
“It is totally normal for family members to be in denial. It is actually part of the grief cycle,” said Castelo, recommending the patient tell her son something like: “Son, I know it is hard to talk about my MS. I am here whenever you need me and to talk to me.”
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