March is MS Awareness Month.
Family physician Lisa Doggett was 36 when she was diagnosed with multiple sclerosis (MS), a cross between dizziness, jet lag and motion sickness, followed by double vision and changes in her taste, prompting her to see a neurologist.
“Looking back, I should have suspected it, but even as a doctor, it didn’t even cross my mind,” said Doggett, author of The Escalator Upward: Medicine, Motherhood, and Multiple Sclerosis. “When I heard the words Multiple sclerosisI was relieved that it wasn’t a brain tumor but I was terrified because I have memories of treating MS patients who were severely disabled, and I really felt like all the doors to my future had been closed in my face. “It was a terrifying feeling.”
What Doggett, who also has two young children, didn’t realize was how the diagnosis would affect her relationship.
“MS is really tough on marriages, and on all really close relationships because it adds an increased level of stress, and certainly that was true for me and my husband,” Doggett said. “Over time, it was up and down. There were times when his anxiety about this was worse than mine, and I had to say to him, ‘You’re not allowed to be any more upset than me about this.’
Women are three times more likely to develop MS than men. Like Doggett, after the initial shock of diagnosis, many women also feel a sense of shame — wondering if they brought the chronic disease on themselves, Heidi Crichton, MD, a neurologist and medical director of the MS Center of Greater Washington, explains. Then there’s a cloud of uncertainty hanging over them about potential future disability — along with the actual physical effects themselves — and concerns about how their partner will react. This burden can wreak havoc on intimate relationships.
Watch: How MS affects the central nervous system >>
“The way MS affects a relationship has a lot to do with how well you communicate in that relationship, the degree of shyness, and the degree of willingness to face the diagnosis,” said Gayle Lewis, Ph.D., a psychologist and certified MS psychiatrist. Care practitioner. “Because when you talk to someone about it, when you tell your partner about it, it makes it more real. When you keep it to yourself and keep it a secret, you can almost pretend it doesn’t exist.”
Doggett’s husband, who she has been with since she was 18, was with her when she was diagnosed and supported her through the treatments, seizures and emotional ups and downs that followed. They have worked hard on their communication over the years.
“I was comfortable talking to all my loved ones about my diagnosis,” she said. “I know a lot of people with MS aren’t able to do this. There’s still some stigma associated with it. I’ve been able to reach out to people by phone or email and share the news, and I’ve been lucky to have a lot of support.
But this is not always the case.
“When I have younger women, their partner often comes with them, and the response is usually, ‘What can I do to help my partner?’” Crichton says. “But with older women, I often see them end up being single — Men don’t always stay.”
Dating with MS
It’s hard enough to have open communication about chronic illness with a trusted partner, but it’s even harder for women who are dating. They have to find the balance between telling a potential partner too early, before they’re really ready, and waiting too long, when it may seem like their date has been misled.
“It can be really scary. You may also feel a huge burden having to tell someone when you’re not ready,” Lewis said. “But if you’re asymptomatic like many people with relapsing-remitting MS, you can tell your partner Likely what type of MS you have, how it has looked so far, and how it is or has not been interfering with your life. For many prospective appointments, they say, “Okay, great, no problem.”
Ultimately, the right time to disclose is when you feel comfortable.
“Listen to your gut,” Crichton advised. “If you feel like this is the right time to tell someone, that’s great. If not, don’t do it. It’s your personal information that you can choose to express or not, and you are in control of when you choose to express that.”
How MS can affect your sex life
MS expresses itself differently in each person—Creighton calls it a “snowflake” disease because the symptoms are unique to each individual. But depending on the location of spinal and brain lesions, women may experience numbness in the genital area, an inability to reach orgasm, or spastic reactions in their limbs that may make sex difficult or uncomfortable. Fatigue, depression, and low libido can also lead to a lack of interest in sex. Inability to control the bladder or bowel is the problem Crichton hears most often from her patients.
Read: Beyond the body: How MS affects your life >>
“It causes a lot of anxiety in women,” she explained. “They’re thinking: ‘Oh my God, what if I empty my bladder during sex?’
Fear of such incidents and the partner’s reaction to them can prevent a woman from wanting to have sex.
“Having MS can make a woman feel ugly, deformed, and unwanted, and that’s not necessarily going to motivate someone to try to go out and meet someone or be intimate with their partner,” Lewis explained.
If you are sexually active, be sure to talk with your health care provider about contraception and whether you plan to have children. Taking MS medications doesn’t affect your contraceptive choices, but, Crichton said, some medications can harm an unborn baby, so your treatment plan could change if you’re pregnant.
How to restore intimacy while living with MS
MS symptoms or concerns don’t have to get in the way of your sex life. Here are five tips to help with physical intimacy if you are living with MS:
1. Communicate early and often. If some positions don’t work for you or you need to take it easy due to fatigue, share this with your partner and make adjustments. “It’s about doing your best to be as real as possible,” Lewis said. “And if it doesn’t work, if one partner gives up, that means you try again. That means you talk about it afterward, outside of the bedroom. You talk about it when you’re not trying to be intimate with each other, but when you’re in a safe place And you can be honest.If communication is difficult, consider getting couples counseling for help with strategies.
2. Don’t be afraid to laugh. There are bound to be some awkward situations, and being able to laugh can relieve tension and allow for conversation. “People who are successful partners…I laugh a lot and it brings them closer together,” Crichton said.
3. Redefining intimacy. People have preconceived notions about intimacy, but intimacy can be experienced in many ways. “It can mean massage, it can mean spooning or just skin-to-skin contact. It’s all about contact,” Crichton said.communication Sometimes a more comfortable word than IntimacyWhich tends to be very limited in people’s minds.
4. Try a body mapping exercise. Lesions may change how and where you want to be touched, so Lewis suggests a body mapping exercise to reacquaint yourself with your desires. “Find a private time and space where you can relax and find different ways of touching your body. Use your hand, find a feather, find a soft cloth, and use each one to move up and down your body very slowly, and notice what feels good and what doesn’t feel good.”
Maybe you’ll find a new place that excites you. Next, have your partner watch, show them what you like, and tell them how you feel.
“It’s a very intimate experience,” Lewis explained. “It’s not about having an orgasm, it’s not about the end point, it’s about the process.”
5. Continue to have “me” time. “Even if you’re not having a good intimate time with your partner or you don’t have a partner, you should still continue with any type of masturbation that you’re doing,” Lewis advised. “Because your sex life is your sex life. It’s not your partner’s sex life.
This educational resource was created with supportORT from Novartis.
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