Jesse and Pat met at work, the way so many adults do after they graduate. On their first date, Pat introduced Jesse to rock climbing. On their second, they saw Jesse’s favourite band and danced all night. And on their third date, they wandered city streets with a thermos full of coffee, laughing about how awkward it would be if their coworkers found out about their relationship.
Eight months later, Pat and Jesse moved into a beautiful two-bedroom apartment and got a cat.
That same year, Jesse started to feel burnt out. The couple agreed to be more active and eat more greens. They’d read an article that said green vegetables would boost their energy. Pat felt great, but Jesse started to feel even worse. He could no longer handle even the easiest rock climbing wall because his left arm kept going numb.
A few months later Jesse was diagnosed with MS.
Jesse and Pat after the diagnosis
The couple cancelled their travel plans because Jesse used all his vacation days to attend neurologist appointments. His most recent relapse left him unable to walk. Because their apartment building is not wheelchair accessible, he can never leave the house without Pat’s help. Pat feels guilty going rock climbing without Jesse and so has resentfully given it up.
They fight about money more often now. Pat has had to take time off work to act as a caregiver for Jesse. That makes Jesse feel like a burden. They rarely have sex anymore. Most recently, they made the choice to move into a smaller apartment in a more accessible building across town. The new place is far from their friends and they both feel more isolated.
Today they’re attending their first support group meeting. They’re looking into the possibility of having somebody else take on some of Pat’s caregiver duties to help them regain a sense of intimacy. Pat has taken up rock climbing again, and Jesse is able to leave the house on his own now that they live somewhere more accessible.
It’s been a difficult road for Pat and Jesse, but they believe the experience has strengthened their connection in many ways. They’ve agreed to live life one challenge at a time, since MS has made their lives together so unpredictable.
The importance of relating in relationships
No two cases of multiple sclerosis are identical. As a result, some people living with MS and their partners are left feeling alienated or alone. Not having anyone to relate to or commiserate with can lead to insecurities and feelings of guilt about one’s MS symptoms or disabilities. Partners of people living with MS can feel frustrated when they don’t understand why a spouse is behaving a certain way. In the context of long-term romantic relationships, these insecurities and misunderstandings can lead to imbalances within a relationship’s power dynamic, which in turn can lead to conflict and, in more extreme cases, situations of abuse. Talking openly right from the beginning about the effects of MS on both your lives is important to maintaining a healthy and mutually fulfilling relationship.
We are here to offer you support and tangible resources to help you navigate the many challenges and joys of maintaining a long-term romantic relationship that is affected by MS. Below we’ve listed four of the most common changes and challenges that can occur as a result of MS, and offer tips for managing each one.
Spoiler alert: communication, adaptability and patience are major keys!
Let’s get physical
Physical symptoms like incontinence, numbness, and sexual dysfunction – among others – can create challenges for maintaining intimacy with your partner. Much like other MS symptoms, these can be managed by discussing them with your MS healthcare team. Gaining a better understanding of your symptoms will allow you to adapt your lifestyle accordingly. Maintaining open communication with your partner and exploring new ways of experiencing intimacy and sexuality together can be incredibly rewarding. Hiring outside help for some of the more sensitive caregiver tasks can also be helpful in diminishing feelings of guilt or embarrassment, which can inhibit intimacy between you and your partner.
Other physical changes like mobility or fatigue can affect your ability to contribute to the partnership in other ways, like keeping up with daily tasks. The onus can fall on your partner to take care of tasks you used to share. Maintain an open dialogue with your partner about how these changes affect each of you. Develop a plan together that outlines how each of you will contribute to your life together. Discuss ways you can effectively support each other when tasks begin to feel imbalanced. Make sure to include time for your respective self-care in your plans.
Making it work
MS can also affect your ability to maintain employment, which in turn can affect your ability to contribute financially to your partnership. Build a working plan with your partner that outlines a variety of possible future scenarios and how you will adapt to each one together. (The financial burden of MS can be significant. We are always advocating on your behalf for better employment and income supports and flexibility in the workplace.)
Maintaining an active social life as a couple directly contributes to feeling connected and fulfilled. MS can affect your social life in a number of ways. Fatigue can make it especially difficult for you to stay out late or socialize in big groups for long periods of time. Like in Pat and Jesse’s story, activities you once enjoyed together like rock climbing may no longer be possible. Even going out for dinner can become complicated if you are using a mobility aid and your favourite restaurants are not accessible.
Try to be open with your partner about your needs and limitations – and listen openly to theirs. Agree on a plan before you go out, just in case you need to leave early. Making these decisions together ahead of time can reduce hurt feelings or disagreements later in the evening. Find new activities you can enjoy together. Discuss ways you can maintain certain activities independently from each other.
Counselling and support groups can be very helpful for maintaining an open dialogue about your respective experiences. You can always reach one of our MS Navigators by phone or e-mail at 1.844.859.6789 or firstname.lastname@example.org.
MS affects everyone differently, but you’re never alone. What are some of the ways you maintain an open and honest dialogue to feel connected with your partner? What are some of the things you have found do and don’t work when it comes to maintaining a relationship that is affected by MS? Let us know in the comments – your story may help someone facing similar challenges feel less alone.