Relationships are challenging. Any relationship. The challenges increase when one partner is suddenly, or gradually over time due to a debilitating illness, living with a physical disability.
“The worse thing a couple can do when one of them has a disability is not talk about it,” says Leah MacInnes, a registered marriage and family therapist with more than 25 years of experience counselling couples, many of whom have faced a disability.
“Each couple’s situation or major challenge is different,” says MacInnes, who is based in Victoria, B.C. “The most important thing is to communicate, to stay connected.”
Acknowledge the change
“It’s important that couples first acknowledge that there’s been a big change – and change can be difficult,” she explains. “Some couples face a chronic loss over time due to a disease like Alzheimers or arthritis. For others it’s sudden. An accident can suddenly render a spouse quadriplegic. They are no longer as they were before. Perhaps an individual was quite active. Perhaps the couple enjoyed cycling together. How do they each feel about the disability? That change needs to be acknowledged to ensure the health of the relationship.”
Team up against the enemy
MacInnes urges her clients to team up against the problem, which is the illness or the disability – not the partner who has the disability. “I advise couples to make commitment from the get-go to work as a team. Don’t fight each other – but bond in face of the enemy. It’s Bob’s osteoarthritis that’s the problem, not Bob, so get angry with the osteoarthritis. Mobilizing as a team makes the situation less isolating for the spouse with the disability, and they won’t feel like they’re a burden.”
Be mindful of – and address – shifting roles
“Relationships are contracts, whether they’re overt or covert. When we’re in a relationship we have expectations, ‘jobs’ if you will. If one spouse develops rheumatoid arthritis and can no longer work around the home or if one of them can no longer drive, they need to discuss how certain tasks can still be accomplished. Who will fulfill what function?”
Never focus on blame
“People struggle with the blame issue. It can be difficult for some spouses to express their feelings – their sadness, their sense of loss, their frustration – without making the disabled person feel badly. But not expressing our feelings is not an option,” says MacInnes. Her recommendation? “I sometimes suggest they write a letter to the disability, talking to the illness, talking to the multiple sclerosis. Doing this frees the couple to share their feelings without placing the burden on the one who has the disability.”
Identify potential supports
“Some individuals in a relationship tend to be reliant on their partner, while some can be very independent. When one partner becomes disabled it’s important to understand that it’s okay to ask for help from friends and family. It’s important to have the discussion, ‘Okay, how do we reach out to other people – and to whom?” Organizations can be helpful. For example, the Multiple Sclerosis Society of Canada offers a peer-support program and The Arthritis Society lists community supports here.
Acknowledge changing identities
“Who we are, how we function, how we contribute to the world – all of that can change when a person has a disability,” says MacInnes. “The key word here is ‘change’ – not ‘end.’ A spouse, for instance, may have viewed himself as a strong provider, a doer. Sidelined by an illness or a mobility issue can make him feel different. Family and friends, however, still appreciate his contribution, his value. Let him know that.”
“If a spouse comes home from work and their partner, who’s living each day with a disability, is in a bad mood, it’s important to be empathetic – and not respond with, ‘Gosh, why are you so grumpy?’ But, rather, ‘Wow, it sounds like your pain has been really bad today. I can hear your frustration.’”
Get intimate! Sex is still important.
A disability can impact a couple’s lovemaking. “Physical intimacy is so strongly linked to emotional intimacy,” says MacInnes. “Talking about emotions quite naturally turns to talking about sex. Candid talk is helpful. An illness or injury may mean a partner experiences pain in a certain part of their body. Other couples may need to consider a change in sexual positions.
Timing of sex can also be an issue – especially if one has endured a day of pain or discomfort. There’s always morning sex. And it’s important to pay attention to the feelings of doubt that can arise: ‘Do you still find me attractive with this disability? It’s important for the couple to discover a new way of being intimate with each other.” Organizations such as the Multiple Sclerosis Society of Canada often post information about intimacy after a diagnosis.
Talk about money
People living with a disability typically earn less. “Losing financial stability is scary for all of us,” says MacInnes. “When a couple’s earning power is diminished, there is fear. Talking about it, seeking solutions, provides hope.”
Explore how technology can help
Technology, such as assistive devices, helps couples manage the loss, fulfill certain functions, whether it’s enabling a person in a wheelchair to cook or innovations that enable someone to be more mobile and independent.
“It’s important to continue having fun – even if it looks different from before,” says MacInnes. “Ensuring there’s joy is an essential part of adjusting when one partner has a disability. It brings them together.”