Living with secondary progressive multiple sclerosis is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness, comradery, and understanding — it is also sensuality and the act of sex.
MS does not quash the need for intimacy; they are not mutually exclusive. They are, however, sometimes elusive. Physical and psychological obstacles can diminish our capabilities, but our needs and desires are still alive.
Disease-related changes in our nerve pathways affect desire and arousal. Stimulation can be painful and the ability to orgasm severely diminished. Sexual pleasure can decrease due to pain, numbness, fragility, spasticity, muscle weakness, or fatigue. Bodily changes make us shy: Changes in weight, lack of mobility, and fear of rejection create psychological barriers.
I liken this situation to a third party in a relationship infecting our ability to stay close. This third entity is omnipresent and invasive, creating a chasm between the other two parties. What can we do when the sexual aspect of intimacy appears to have disappeared?
We redefine intimacy.
Affinity with another is unique. The beauty of intimacy is that it entails more than physicality. Redefine intimacy to fit your abilities and desires. As my disease progresses, I find closeness in a variety of activities. I love to laugh. Tell me a joke and I am yours. I feel close to my husband when we laugh together.
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Emotional intimacy is vital. Be vulnerable and discuss difficult topics. Establish mutual needs and ways to attain them. Carve out time to be together. Discover one another again and remember why you fell in love. Join your partner in what makes him or her happy, then reciprocate.
As humans, we crave touch. Touch elicits oxytocin, a hormone that acts as a neurotransmitter in the brain which is released when we hug, touch, or achieve orgasm. Oxytocin promotes emotional fulfillment and relaxation, which reduces anxiety. When I experience MS-related side effects, I do not want anyone to touch me. I hide in plain sight. I need to make an effort to reach out and break through my self-imposed barrier.
MS does not negate our needs, but it does make it more difficult to have our needs met. This challenge can test even the strongest couples. It is easy to fall into the realm of roommates and typical for a partner-turned-caregiver to feel resentful over more responsibility and perhaps less sex. Meanwhile, the partner-turned-patient struggles with feelings of guilt and shame. Communication is vital or this pattern will perpetuate.
We must redefine intimacy.
As our disease changes so too will our interpretation of intimacy. Kindness and humor make me weak at the knees. Heartfelt interest in my day softens me. Win me over by showing me selfless compassion. Laughter is a magic elixir.
Intimacy is a sacred balance shared between two people. Be it emotional, sexual, or a merging of both, stay true to your wants and desires. MS may alter your path, but the footsteps are yours to take.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Thanks for talking about this subject, Jennifer! I’m living with SPMS also, and sex has become non-existent in my marriage. And I do have a lot of guilt and shame about it!
My husband is an awesome caregiver. He has had to pick up so many of the household chores, and never complains about it. But when it comes to sex, I wonder how long he can continue to stay in a celibate marriage! He says he understands and doesn’t pressure me about it. But I hate it that this hideous disease has taken away a very important part of my marriage. We mostly deal with the subject with humor, but there is a sense of loss deep down.
I’m a male age 65 with SPMS and had ms for 20 years and E.D. for 12+ years! What type of doctor should I see to correct my problem?
Within our social lexicon sex with someone with a disability falls in the gray area of kink. The adaptive equipment we need to bring to the bedroom, triangular pillows, lubricants and so forth can be purchased online or at sex shops, but most people are embarrassed to ask what they need to accomplish healthy sexual experiences as a person with a disability. There are also podcasts, Disability After Dark with Andrew Gurza that can shed light on how to achieve sexual satisfaction, a healthy human need.
Hi James,
I am sorry this has been your experience, how frustrating. I would recommend discussing the situation with your family doc and asking her or him for a referral for E.D. treatment. There are treatments out there that will allow you to maintain an erection and if not achieve orgasm at least experience sustained pleasure. It is important, it is part of what makes you yourself. You have my empathy.
Thank you Jennifer for talking about this. I’m a male 61 , have been diagnosed for 20yrs, and try to explain to my wife how this makes me feel, and to be perfectly honest I feel like a disappointment and less than man. We try and sometimes are somewhat successful, but most times I don’t want to be touched either. I can see the disappointment on her face. She often wants to “snuggle” and I just don’t. Does that make me a bad husband? Up until this last bout we were pretty good sex was fun and intimate, but recently I just can’t and she takes it personally and I don’t know what to do. We do other things and I try to explain to her but it never comes out right. It’s not fair to her. It just sucks