Being diagnosed with a life-limiting condition or chronic illness doesn’t have to mean a life sentence. We speak to advocate Kerry Riches, who was diagnosed with Multiple Sclerosis 17 years ago, about her experiences, and learn more about how you can adapt to your ‘new normal’
When her son, Tom, was just 12 weeks old, Kerry Riches found herself in front of the doctor. “I’d started tripping over my own feet, I lost my vision in my left eye, and got pins and needles in my hands and feet, like my fingers were going to explode,” she explains. Working in the NHS as Head of Patient Experience, she was determined to get the best care. “No one knows their own body like the patient. So I spoke to the doctor and said, ‘I don’t want to be difficult, but I’m not leaving today without an MRI’.”
Kerry thought she had a brain tumour. Instead, she was diagnosed with MS. “I didn’t cry,” she admits. “I didn’t get upset. I just sat there and thought, ‘That’s fine. I know what it is now. This is gonna be ok’.”
GONNA BE OK
Receiving bombshell health news like a diagnosis of MS is life-changing in so many ways – emotionally, physically, socially, and practically.
Life may become a swirl of medical appointments, benefit applications, home adaptations, learning how to use new equipment or adjusting to big lifestyle changes. Relationships with loved ones may change as they shift towards a caring role, friendships may alter, you may have to reduce your work hours or quit altogether, and you may experience physical side effects from new medications.
Pathways will open up; there’ll be opportunities for treatments, friendships, new interests and connections, alongside frustrations, fears, tears and upset.
KINDNESS FIRST
Getting any kind of diagnosis can be challenging, so being kind to yourself is a top priority. And knowledge is power – equipping yourself with information about treatments, symptoms and support networks (and reaching out to those support networks) can ease the transition into your newly-diagnosed life.
From the moment of her diagnosis, Kerry decided she wasn’t going to let MS stop her from doing anything. “I call it my superpower because MS has pushed me to do things I never would’ve done without it.” For Kerry, that’s meant appearing on Big Brother to help raise awareness of MS, as well as speaking on national news channels about subjects including welfare cuts, disability rights and media representation, plus becoming a mobility aid-using model for curvy clothing brand Yours.
FIND YOUR TRIBE
Kerry also supports people who are newly diagnosed, who get in touch via her social media channels. “I get contacted by all sorts of people saying, ‘I feel like my life’s over’,” she says. “No, it’s not. It’s just beginning. I help a lot of people by talking to them and helping them see it differently.”
Online communities and in-person groups can be beneficial for anyone dealing with a diagnosis; sharing your experiences with people who’ve gone through something similar and learning more about the journey your condition may take can be reassuring, as well as helping relieve feelings of isolation.
Taking time to adjust to your ‘new normal’ is also really important too. You may find you need to change your employment hours or stop work altogether (you can speak to your HR department, your union, or a charity dedicated to your condition for support with navigating this).
Adapting to medication, treatment regimes or surgical recovery could be part of your life now, along with learning how to rest, how to ask for (and accept) help, and getting to grips with equipment or technology that can help alleviate your symptoms and make life more manageable. And good emotional support is vital to aid your transition to life with a diagnosis.
Your family and loved ones may need support too, whether that’s practical or emotional. Your local Carers Centre can be a great first port of call for information and advice, and be sure to contact your social work department to discuss a Carers Assessment if your spouse, partner, child or other loved ones take on a caring role to support you.
UNDERSTANDING
Kerry has been lucky to be supported by a great MS nurse and explains that, when she was first diagnosed, there was a “real coordinated approach – because I was only 12 weeks postpartum – including the MS team in my local primary care area, and my health visitor. The MS nurse came to my family home – she was incredible,” recalls Kerry. “She sat with us for about three hours and explained what MS is.”
“No one knew anything about MS 17 years ago, especially not in my family,” Kerry continues. “At the time, my husband was a manager at Game, the computer shop. So the nurse likened MS to before gaming controllers went wireless, explaining it’s like if you were playing Mario Kart and wanted to turn a corner, but someone cuts the controller cable. So the action you want to do doesn’t translate and happen on screen.” It was the perfect metaphor for the impact of MS.
Kerry describes MS as “a sink or swim illness. It can take you and drag you under,” she explains. “But I’m a swimmer, so I’ve kept swimming ever since my diagnosis.”
She reassures people that a diagnosis “doesn’t need to be you. It doesn’t need to be the end. There’s always a way to navigate around it – your path might not be the one you wanted to go on, but another path can be just as good.”
Follow Kerry on Instagram and TikTok.