Out of the blue, in November 2019, Byron Hall’s wife Sabrina, 52, began having strange symptoms. She suddenly suffered from extreme fatigue and weakness in her legs. After a couple of falls, they headed to the ER. There she was diagnosed with relapsing-remitting multiple sclerosis, a chronic neurological disorder that affects the central nervous system.
“It definitely came as a shock,” says Hall, 55, an actor from Newport News, VA. “We weren’t expecting that. We both had so many questions about what the future would look like: Would she be able to go back to work as a teacher? What was the long-term prognosis? What did it mean for our 12-year-old son? It was scary and a lot to take in.”
Hall knew that as his wife’s care provider, he needed to get answers to many of his questions about life with MS. One of the first people he turned to was a good friend and former high-school classmate from the Bronx whom he knew had been living with MS for 15 years.
She gave him the gritty details about life with the disease. Another friend introduced him to the resources offered by the Multiple Sclerosis Society, including support groups and educational brochures. One addressed how to speak to their son about his mom’s condition.
Understanding the disease and what it means to be a care provider are both important first steps in any MS journey, says Julie Fiol, director of information and resources for the MS Society. “Many people have heard of MS, but the general population doesn’t know exactly what it is.”
Multiple sclerosis is a disease that affects everyone differently. Many patients, like Sabrina, begin by showing symptoms such as weakness, fatigue, balance issues, and difficulty walking. Some symptoms may come and go and can last anywhere from 24 hours to several weeks. Others can appear once and never return. In the extreme, some patients may be unable to walk or care for themselves.
One of the first questions the newly diagnosed and their caregivers usually have is about long-term lifestyle changes, mobility, and the ability to work. If they are diagnosed as a young adult, they want to know whether the patient can have children and if they’ll pass the disease along.
Plus, she says, “We have 18 different therapies to consider. That’s wonderful, but also very confusing.” And caregivers are suddenly thrust into a whole new world as well as a healthcare partner for the one they love. This advice can help you both navigate this new world.
Identify Your Strengths
The role of caregiver is a big responsibility. Fiol suggests that the newly diagnosed and their partners work together to find the answers to their questions. One may be better at research and another at talking to family and friends. “It’s important for couples to stay on the same page by communicating and letting the person with MS be the guide.”
Hall’s advice: “Don’t panic. Do your homework and be there for your partner to support them.” But, he says, let them call the shots. Don’t tell them what to do because they may resent it. Instead, offer suggestions based on what you’ve learned through research, but in the end, he says, let them take the lead and make their own decisions.
Share Facts and Figures in Bits and Pieces
If you go on a fact-finding mission, don’t hit them over the head with all you’ve learned without asking if they're ready to hear it, says Fiol. “They may not be receptive to receiving all that information too quickly.” Remember there is a grieving process with a lot of feelings and emotions that can be different from person to person and that can change throughout the day. You could be watching someone’s Instagram page and something frightens you so you go from empowered to frightened.
“Ask: What are you thinking?” she suggests. Hall notes that even when his wife says nothing is bothering her, he knows better by watching her body language. Stay in tune with your partner and ask if they want to talk about how they are feeling or if they want help. Bottom line, he says, is to listen and show them they are not alone. Sometimes, as a caregiver, that’s all you can do.
Take Care of You, Too
Care partners are a vital source of support and assistance to those living with MS. But don’t let self-care fall off because burnout and exhaustion can result, says Fiol. “Caregivers need to remember to take care of themselves.”
Hall says that though his primary goal is taking care of his wife, he tries to meditate, exercise, and eat a clean diet. “Those things all help me to stay grounded and keep levels of stress down.”
When he needs to vent or talk about his worries, he calls one of his friends who has experience with MS. There are also many hotlines and support groups to help not only the patient, but the caregiver as well.
Work as a Team
When faced with a scary medical diagnosis, some partners hit the road. Others truly believe their vows of “for better or worse.”
An unpredictable future didn’t stop Nick Smith, 35, from marrying his fiancé Morgan, 29, one week after her diagnosis. The Seattle couple was engaged in the summer of 2017 and planned a June 2018 wedding. But during that time, Morgan began having symptoms including fatigue, weight loss, and problems walking.
When she finally got diagnosed in April 2018, she wondered if they should put the wedding on hold, Smith recalls. But he wanted to marry her right away. “I believe we are step-by-step going to fight this disease as a couple. I wanted to cement that with our marriage.’
While researching the disease, he learned that there was an upcoming local MS walk to raise funds for research. So, in a week, the couple raised a whopping $14,000 from family and friends and had team T-shirts made. On the day of the walk, they stood in front of an inflatable arch festooned with orange balloons at the finish line to take their vows.
“The unknown of what was happening to her before we knew was harder than getting the actual diagnosis,” he says. Once they had a diagnosis in hand, he felt “we could move forward to find a cure and help relieve some of her symptoms. I was confident that the two of us together would get through whatever challenges there were.”
Communication is key to coping as a couple. The best thing you can do as a partner is to ask, ‘How can I share in this road” and make sure you navigate it as a team, says Smith.
“In a lot of ways, MS is an invisible disease and it’s hard to know the daily struggles that your partner may be experiencing,” he says. “I’m not a mind reader so we consistently work at overly communicating and dealing with little irritations or frustrations before they become big breakdowns.”
Learn how your partner thinks, he suggests. To lighten the mood over the disease that has become such a constant in their life, Morgan named her MS symptoms “Becky.” She’ll say: “Becky is kicking my ass today,” says Smith. Referring to her daily struggles in the third person, “makes it a little more manageable.
Get to Know Your Partner’s MS
Everyone copes with the disease in a different way. “Some want connections to other people living with this disease for reassurance and validation. Others don’t want to think about it, says Fiol.
If you need support but your partner doesn’t, find a group for caregivers. If your partner is into it, go to a group for couples.
Learn when to offer help. When the person with MS is having symptoms, they may need more help than at other times, she says. Don’t just step in to help; instead, ask the person if they want help. “That gives them more control.”
Celebrate Life Going Forward
It’s natural to mourn the future you imagined, but it just takes some readjustment to your new normal. “It’s ok to be sad, but that’s no place to stay,” advises Hall. “It is what it is and it’s all how you look through the lens.” He tries not to “get too high or too low. Those feelings block you from actually caring for your person properly. I come from a place of confidence and that is empowering.”
Morgan and Nick know their future will look different in many ways. It will affect where they live, having children and other issues affected by MS.
But they take it in stride. One of the first changes, he notes, is how they vacation. “She used to want to go somewhere warm and lie on the beach but now the heat heightens her symptoms. So, instead, we take winter vacations with a more moderate climate. She doesn’t drive at night any more either. It’s a learning process,” says Smith. “Every day is different; an adventure, but we are in it together.” And who knows what medical advancements will make life easier in the future.
Research, treatment, medications and more on the horizon will likely bring advances in how people deal with their MS and its complications, notes Fiol. To find support and stay updated on what’s new, contact the resources below:
Can Do Multiple Sclerosis delivers health and wellness education through webinars, wellness weekends and other programs for people with MS and their support partners.
Check out their webinars aimed at support partners that tackle issues including care for the caregiver, communicating about tough subjects and building satisfying partnerships.
National Multiple Sclerosis Society offers lots of educational material, programs and services for patients and family members online and in your community.
- Check out their “8 Hours to a Lifetime of Relationship Satisfaction,” an enrichment course for couples living with MS.
- Download “A Guide for Support Partners.”
Multiple Sclerosis Association of America (MSAA) offers a range of services, including a toll-free helpline, community forum and blog.
- Join their community online forum to talk to other care partners to share information and experiences with MS.
- The organization publishes numerous publications for those with MS, their care partners and family members. See their magazine, the Motivator, with many articles aimed at caregivers.
MyMSTeam is a free social network and online support group for people who are living with MS and their care partners. Connect with a community of others who understand what you are going through.