Sex and Intimacy Is Focus of MSAA Webinar

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by Bionews Staff |

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sex and intimacy

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.

Thatā€™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 AmericaĀ (MSAA).

While no specific studies link sex to fewer MS symptoms, Castelo wrote in response to a question on My MSAA CommunityĀ ā€” the organizationā€™s peer-to-peer platform ā€” ā€œresearch 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.ā€

Casteloā€™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 ā€œIntimacy and Family Planning with MS.ā€Ā The third one on March 18 was on ā€œThe Partnership of Care,ā€ featuring MS nurse practitioner Megan Weigel.

The last in the series, ā€œAsk Me Anything,ā€ is scheduled for March 25. The Q&Aā€™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, ā€œhave a lot of shame around how much sex they are or are not having.ā€ Many also struggle with intimacy and experience sexual dysfunction at some point.

ā€œWhat I am hoping for is that people do not put pressure on themselves to have sex or not to have sex,ā€ she said, adding that pressure ā€œjust kills a libido.ā€

Instead, they should focus on ā€œconnection and pleasure, and allow themselves to define what that looks like.ā€

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 ā€” a class of drugs used to treat depression ā€” Ā should check with their doctor to make sure the medication isnā€™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.

ā€œIt is totally normal to feel scared to share your feelings,ā€ she said. ā€œReally, the best way to help that feeling is to share how you are feeling with your loved ones ā€” even telling them, ā€˜I am scared to share this because I feel I will be a burden.ā€™ā€

She also recommended the book ā€œHold Me Tightā€ by clinical psychologist Sue Johnson, and Hold Me Tight workshopsĀ 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

ā€œOne main concern I hear is that it is difficult to be in the caregiver role and also the lover role,ā€ she said. ā€œThose two hats can look and feel very different, so getting help on how to manage those feelings from a sex and couplesā€™ therapist would be very helpful.ā€

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 itā€™s totally an individual choice.

ā€œIt is really important to know that ‘your MS story’ is yours, and you are allowed to share or not share it at any time,ā€ she said. ā€œTaking your time to share your MS story is totally OK. It is also totally OK to be very open with your MS story.ā€

How does one start a conversation about MS in a dating situation?

ā€œI am always for being more overt in my communication,ā€ she said in response to a question on that topic. ā€œSo if I am unsure on how to start a conversation, I say, ā€˜I am not sure how to start this conversation, but there is something I want to share with you about myself.ā€™ Usually when you begin statements in that manner, you invite the other person to be understanding and supportive.ā€

Another participant said her adult son is in denial about her illness and doesnā€™t want to hear about it.

ā€œIt is totally normal for family members to be in denial. It is actually part of the grief cycle,ā€ said Castelo, recommending the patient tell her son something like: ā€œSon, I know it is hard to talk about my MS. I am here whenever you need me and to talk to me.ā€