Living with MS
Six months after her daughter was born, Kimberly stopped nursing, and soon went completely numb on the left side of her body. An MRI uncovered that she had 8 lesions on her brain, which she says led to a quick diagnosis of MS. While her MS has been in remission for 12 years, her prognosis could change at any time.
Despite her remission, Kimberly tells us that situations exist that can still trigger MS symptoms. She informs us that many people with MS have trouble with heat which affects her sight. Difficulty swallowing and walking and feeling a tingling along her body are also common, she explains, especially in the heat. At a psychological level, Kimberly reports that people with MS have to live with a great deal of the unknown, as they can’t guarantee their level of functioning from day to day.
Support for the Newly Diagnosed
Kimberly tells us that many support groups exist for people newly diagnosed with MS, some of which can be found in the Resources section of these show notes. She recalls when she was first diagnosed, she thought MS was a death sentence, which she now knows is incorrect. However, she counters that while MS doesn’t kill, it does hinder functionality, which she found devastating enough to trigger all the classic stages of grief. She attributes her acceptance of MS and her emotional recovery to the love and support of her partner.
Difficulties with Sex in MS
Ms. Castelo points out that many people with MS are depressed, which leads to wide usage of libido-lowering SSRIs. Even without SSRIs to reduce sex drive, Kimberly informs us that 85% of women and 90% of men with MS suffer from sexual dysfunction.
For both genders, Kimberly tells us about spasticity issues, generalized pain, and difficulty moving legs that can impede sexual function. Kimberly says that another common problem is that MS affects the bowels, causing some people to lose bowel control during sex.
She warns that people with MS can fall into having obligatory sex to please their partners, which she describes as incredibly damaging. She believes that sex should prioritize both you and your partner’s satisfaction, never just one person’s.
Kimberly explains that the partners of MS patients can suffer too. Many partners become caregivers, and amongst partners who become caregivers, switching hats to make sex possible can be difficult, especially when their partner needs a lot of care. Kimberly encourages caregiving partners to compartmentalize moments and force themselves to have fun and playful events as well as their required caretaking.
Another problem amongst caregivers that Kimberly sees in her practice is that people operating as caregivers often don’t share their own struggles. In those cases, she reminds caregiver partners that humans enjoy helping each other, and by not sharing their struggles, they are depriving their partners of that joy and intimacy. Helping partners with problems, she asserts, is also empowering to the partner with MS, because they are given the opportunity to be a caregiver as well.
Improving Sex with MS
Kimberly says that for people partnered with someone who has MS, it’s important to allow space for grief before they can begin problem-solving. After the grieving gives way to acceptance, she states that couples may be surprised to discover that sex with MS can create phenomenal sexual connections due to the incentive MS creates to explore new avenues of sexuality. It can even raise the quantity of playful erotic moments in people’s lives.
She describes her concept of daily erotic moments as simmering with her clients. Just like making a soup, she suggests that first, you get things started, then it starts to smell good, then better, and in the end, it’s so amazing that you have to eat the stew. She mentions that having multiple sexually intimate moments throughout the day can produce an identical effect.
Expanding the Meaning of Sex
Kimberly suggests expanding the definition of sex is important. She says it’s not just about genitals touching genitals. She says it’s about flirting, touch, cuddling, holding hands, passionate kisses, and learning to bring those acts to a level that facilitates deep pleasure and connection in both people. She teaches that slowing down sex to accentuate and be more mindful about each action increases the eroticism of life. She insists that sex can’t just be about genital-to-genital contact and orgasms.
Sex Therapists and MS
When you’re figuring out how to plan sex and keep it romantic, when is a good time to have sex to avoid fatigue, and how to get involved in sex in the first place, Kimberly says a sex therapist can help. She also suggests that sex therapists can help MS patients and their partners figure out how to really connect emotionally and share their sexual challenges with each other. She says sex therapists can help couples plan sex around the best times of day to avoid the crushing fatigue of MS. Despite popular conceptions that sex should be spontaneous, Kimberly says people with MS in particular need to schedule sex sessions.
She also warns that it can be difficult to cope with partners about the changing, day-to-day pains that people can feel with MS, but therapists can encourage communication, creativity, and being mindful and appreciative of sexual actions that don’t involve intercourse.
Kimberly Castelo is a Licensed Marriage and Family Therapist, a Certificated AASECT Sex Therapist, and a Certified ETF Couples Therapist. As a Certified Integrated Intimacy Professional, she believes in treating mental health in a holistic way, exploring individuals, couples, family systems, sexual health, medical issues, and spirituality to create a full picture of her clients’ lives and resources. As a woman who’s lived with MS for 13 years, Kimberly intimately understands how medical maladies can influence the mental health of families and individuals. This experience combines with her training to provide invaluable insight into relationships and sex.
Resources for Kimberly Castelo: