“I no longer want a life with a wife who is disabled”.
Although Brenda and her husband had been suffering marital issues, his admission came as a surprise.
Brenda started to get ill two years into their relationship and was diagnosed with primary lateral sclerosis, a rare form of motor neurone disease that affects mobility and speech.
Their wedding went ahead despite Brenda’s reservations about becoming a burden on her partner.
“We got married near the White House, and I was so exhausted from the day that I could not walk,” says Brenda, from Washington DC.
“I made it about half a block and he got so mad at me and annoyed that I had to stop and ask him to call an Uber or a cab. He got annoyed that wedding night.”
Primary lateral sclerosis causes nerve cells in the brain that control movement to slowly break down and stop working. This causes a weakness in muscles that control the legs, arms and tongue.
In the early stages of their relationship, Brenda and her husband had lived an active lifestyle and Brenda would regularly go running.
“I noticed that I couldn’t run as quickly as I had been and then I couldn’t run,” she says, calling the experience “terrifying”.
“No one expects a 30-year-old to have a serious illness. You don’t want to go out. You don’t want to talk because your speech is changing, and more.”
Brenda says the couple were having issues before their eight-and-a-half year relationship ended – with the final straw being over mail.
“I asked him, ‘did you mail that box?’, and he said, ‘no I haven’t yet’.
“I got annoyed because it had been almost a month. That’s when he said, ‘I can’t do this anymore. I can’t do all the things you need from me and I don’t want to’.
“He said, ‘I no longer want a life with a wife who is disabled’.”
Brenda says that her ex-husband then asked her to move out of their shared apartment in one week. She took off her rings and never put them back on again.
It was the end of their marriage lasting four years.
Brenda says her husband emailed her and told her he was not fulfilled in the relationship because they couldn’t go hiking and “I wasn’t as vicarious as I once was”.
She has since remarried and is thinking about having children.
Brenda’s ex-husband says the end of their relationship was a “deeply personal and painful time”, and there were many reasons for the breakup.
“Marriages are not black and white,” he says.
“Our divorce was the result of complex, private issues that had been building for some time, and I would never walk away from someone solely because they became ill.
“Brenda faces an extremely challenging illness with courage and perseverance. Her illness is a tragedy, and I care about her wellbeing after the near-decade we spent together.”
He says that his frustration on their wedding day was directed “at the universe that we were tragically confronted with the illness’s life-changing impact”, adding he was not annoyed with Brenda.
“It felt so unfair to us both that the disease knew no limits and intruded on our experience even on that most special of occasions,” he says.
“I wish her strength and healing and am happy for her that she found and remarried a new and caring partner and continues to thrive in the face of adversity,” he adds.
Gender roles and expectations
Brenda’s experience is not unique.
Research published in February found that in couples aged between 50 and 64, marriages were about 60% more likely to end when the wife had poor health but the husband was healthy, compared with when both partners were in good health.
By contrast, if it was the husband who had health problems, couples were no more likely to split then if they were both healthy.
“Women pay a price in terms of silver splits when they are ill but their husband is not,” says Cecilia Tomassini, one of the researchers behind the Italian study.
She believes that traditional gender roles may be the reason some men find it harder to care for their wives.
“The baby boom generation were characterised by more divided gender roles. Their husbands or partners may be unprepared to take care of their female partner and so they are more likely to get divorced,” she says.
Another study from 2009 found women who had cancer or multiple sclerosis are six times more likely to become separated or divorced as men with similar health problems.
The power shift
Sarah, a nurse who has worked in healthcare for eight years, says she isn’t surprised by these statistics.
She is a carer for her husband, who is paralysed from the waist down.
“I see a lot more women ending up either in facilities or having their children help care for them versus most men staying in their own home and their wives stepping up to care for them,” she says.
“In my opinion, it seems like the men are not really able to handle it because they don’t really know how to process emotions like that.
“They’re conditioned to be more stoic, so they don’t really handle being an emotional support well.”
She acknowledges that her background as a nurse helped to prepare her for becoming a carer. Her husband has no bowel or bladder control and no lower body movement. He needs assistance with bathing, dressing and all aspects of daily living.
“He is no longer able to have sex, but that hasn’t really caused as much of a problem as you would think,” she says.
“The biggest impact really is he feels like a power shift being completely dependent on me and we are not really as free to just get up and do something or go somewhere.
“I do feel a lot of pressure being the only one fully responsible for everyone’s wellbeing in the family, instead of knowing I can fall back on my partner if I need to. Knowing it’s all on me gets mentally draining.”
She says that there was a lot of fighting and resentment in the first year after her husband became paralysed, but they now communicate “a lot more openly and effectively”.
Adjusting to ‘a new normal
Julia Segal, a psychotherapist who has helped more than 600 people with illness in their relationships, says it takes around two years for couples to adjust to a “new normal” in their relationship.
In between that, she says, is a lot of grief work.
“At the beginning, it can be very frightening. There’s such life and death anxieties involved, you’re really worried that one of you is going to die.
“But I’ve found over two years people get used to anything. So you’d think that a really bad disability would affect people worse than a minor disability, two years on they are both in a new normal.”
She says there is terrible guilt for those who decide to end their relationship, even if their partner “has been behaving very badly”.
“You might still feel bad about yourself if you left a partner who was ill, unless of course they have found someone else and they will feel let off the hook,” she says.
“People don’t like feeling like they’re bad people and if you’re not a good enough carer you can feel like a bad person”.
