We talk to Helen and Greg about how they manage Helen’s condition, and why love gets them through
Helen, 37, was diagnosed in January 2019 after experiencing symptoms of multiple sclerosis (MS) for around five years. Her husband Greg now cares for her. So how has this changed the dynamics of their relationship? “I think the diagnosis has made me appreciate Greg as a husband more,” she says.
“I read so many sad stories about partners not being supportive, so I count myself very lucky. Greg is a lot more hands-on with our son now, so it feels like a partnership more than me being mum and him being the breadwinner. Sometimes we have been forced into situations where he has had to become a carer in the fact that he has had to clean me up, get me into showers, and basically do things that I never imagined I wouldn’t be able to do at 37 years old.”
For Greg, Helen’s diagnosis has helped them work more as a couple than as individuals, but it isn’t easy. “It's hard watching someone you love go through this. I feel like I want to be home a lot more now and with a mixture of lockdown – I'm a chef, so I've been on furlough – and watching the progression over the year, I have changed my job to ensure that I am home more for Helen and my son,” he says.
Helen was unfortunate to experience a big relapse a year and a half ago. “For me, the loss of the use of my legs, bladder, bowel has been the biggest challenge physically. It's taken 18 months of physio and training to be able to do things again, and lots of different drug trials to find what works with my body. This has affected me greatly emotionally, and I have counselling to work through these emotions and address my worries about the future. These things can overspill into your mood and sometimes, I just have to step away from the situation and take time to myself to calm down and start to think clearly.
So what had Greg found to be his biggest challenge with Helen’s MS? “The biggest challenge for me has been realising that this won't go away,” he says. “The uncertainty of it all, even when it's stable – how long will it stay stable for? Is the drug is working? There are no definite answers and that takes its toll emotionally on both of us. We do everything we can to stay fit and healthy, and trying to stay one step ahead of the MS. When we had our bathroom and house redone, some of the considerations we put into place were keeping it accessible in case Helen ends up in a wheelchair. Having that as a real possibility was a little scary but is has also given us some control over the situation.”
The couple feel that to have honest communication is the best advice they can pass on to anyone in a similar situation to them. “Just be honest and open – some issues, like sexual things, just have to be openly shared and discussed. It can be really embarrassing. I have bladder and bowel issues but Greg just gets on with it and helps me when I need it,” says Helen.
“Just be patient and be there,” says Greg. “It's hard for me but is nothing compared to what Helen goes through every day.”
“It's a hard few years making the adjustments and it's a huge learning curve,” says Helen. “For me, the diagnosis was a blessing in some ways as it finally confirmed that there was something wrong and it wasn’t all in my head. It definitely takes a couple of years to find yourself find your groove and what works for you in terms of medication and pacing your life so that MS fits in with you and not the other way round.”
“It's going to be hard but it will be okay,” says Greg. “At the end of the day, you’re with someone that you love and you made those vows and you will stick by them because that's what's right.”