Multiple sclerosis (MS) is an unpredictable chronic illness that affects the central nervous system. In MS, the immune system attacks the protective sheath (myelin) of nerve fibers, causing various symptoms that range from mild to debilitating.
Most people with MS have a relapsing-remitting form, meaning they experience periods in which their symptoms disappear or improve (remitting) and periods in which they return or worsen (relapsing). While there are medications to treat the symptoms of MS and slow the progression of the disease, there is no cure.
The nature of MS makes it difficult to predict the course of the disease for each person. Some people may remain independent, and others may need the help of a caregiver to complete tasks of daily living, such as cooking or getting around. The level of care necessary for a person with MS can change from day to day.
Being a caregiver for someone with MS isn’t always easy. In this article, you will learn how to support someone with MS, what to say and what not to say, how to take care of yourself as a caregiver, and other resources.
How Best to Support Someone With MS
The level of support someone needs with MS is often dictated by the duration and stage of their condition. People who are newly diagnosed may be in shock or mourning the life they thought they might have and could need added emotional support.
Someone experiencing a flare (times of new or worsening symptoms) may find it affects their energy levels and may need meals cooked or brought to them. People with MS who have limited mobility may need help getting around. Others whose MS has progressed may need constant care and help with everyday tasks like bathing, eating, or using the restroom.
While each person with MS will have different needs and requiring varying levels of caregiving, there are general ways you can help support someone with the disease.
Educate Yourself
Educating yourself on MS and understanding how the disease affects people’s lives–from the emotional to the physical to the practical–can help you discover how you can be supportive.
Learn about the symptoms. Know what is going on with the person you’re caring for. Do they have spasticity (muscle stiffness)? What does that mean for them? Does it make it harder for them to move in the morning?
Be aware of the emotional effects of living with chronic illness. Stress, anxiety, and depression are common with MS.
Look into practical ways you can support someone with MS. Some examples are researching disability if someone can no longer work or talking to the person’s healthcare provider about their course of treatment. Some MS drugs require injections, and the person with MS may need help administering these.
Make Adjustments at Home
A person with MS may reach a point at which navigating their home becomes challenging. Stairs may become difficult or too exhausting to climb. Wheelchair users may have trouble maneuvering into certain rooms or around furniture. MS can affect vision, and this may also be a factor.
Decluttering and removing tripping hazards can help the person with MS get around their home safely. Home modifications such as widened doorways and a wheelchair ramp may need to be made.
For everyday tasks, sometimes splitting the workload helps. The person with MS may need to remain seated so loading the dishwasher may be an easier task for them than putting away the dishes. You may also help by rearranging the contents of cabinets so the things most often used are within easy reach.
The person with MS can ask their healthcare provider for a home assessment by an occupational therapist. The occupational therapist will offer advice on which modifications, adaptive devices, and tactics can be useful.
Promote a Healthy Lifestyle
Diet and exercise are an important part of living well with MS. Eating a healthy diet that includes plenty of whole foods (foods that are unprocessed and have no added ingredients) and avoiding processed foods, sugars, and high-saturated fats can help improve symptoms such as pain and fatigue in MS.
Exercise and movement are important for people with MS and can improve cardiovascular fitness, strength, flexibility, fatigue, balance, and even quality of life.
While not all exercises are accessible to everyone with MS, encouraging activities and finding ways to adapt favorite sports for the person with MS can go a long way in promoting health.
Ask Your Friend/Family Member How Best to Support Them
While educating yourself on MS is a great step, sometimes the best information you can receive on how to be a supportive friend or family member is to simply ask the other person.
The person with MS may find it hard to ask for help. It may be difficult for them to come out and say what they need. If you ask, you’ll make it easier for them to describe the exact kind of support they could use.
Group Counseling
The National MS Society and other nonprofit organizations offer group counseling online and in person to help people with MS manage their life with the disease. Support groups can be beneficial for the caregiver and the person with MS.
They provide a space to connect with others who can relate to the situation, providing education, support, and mutual aid.
What Makes MS Worse?
While worsening of MS can be unpredictable, you may want to prepare for a possible relapse after an infection, a stressful event, or a period of increased stress.
What Do I Say to Someone With MS
Your family member, friend, or loved one with MS is the same person you’ve always known. And with MS, they have an added stress in their life. Talk to them in a caring manner. Ask how they’re doing. Offer your sympathy when they’re going through a rough time.
Find out if there are ways you can help them with their day-to-day life. Ask how their treatments are going. Ask about their symptoms. MS symptoms are often invisible so it’s hard to know if the person you care about is having challenges if you don’t ask.
Be a good listener. In some instances, the best thing to say is nothing at all. Let the person with MS express how they feel about the disease, their symptoms, the changes to their body, and their daily routines.
What Not to Say to Somebody with MS
Being supportive of someone with MS doesn’t mean you need to find a cure. Offering unsolicited and uninformed advice can appear to dismiss the reality of their disease, even if you’re trying to help.
Saying things like how your cousin’s best friend has MS and they’re doing fine will make it seem like you don’t want to hear about their difficulties.
Telling the person with MS that they don’t look sick may also seem dismissive, especially if they have invisible symptoms that challenge them.
Don’t compare their hardship to your or anyone else’s hardship. Treat them as the individual that they are with their own concerns and fears.
How to Support Yourself as a Caregiver
While caregiving can be rewarding—strengthening relationships and providing a sense of purpose—it is important to learn how to support yourself while providing care.
Caring for someone with MS can be quite taxing on your physical and mental health. People who provide care for someone with a chronic illness like MS may experience poorer health and higher levels of fatigue, anxiety, depression, and anger.
Strategies include:
Take care of your health: Keep up with routine healthcare appointments. Eat healthy, exercise, and get enough sleep.Seek emotional support: There are support groups for caregivers, too. These groups can be in person or online. Connecting with others in similar situations can help make you feel less alone.Find a qualified mental health professional to work with one-on-one.Keep living your own life: While taking care of another person can require time and dedication, it’s important to continue participating in activities you enjoy.Take a break: Ask friends or other loved ones to help you with caregiving. Hire an outside caregiver.
Recognizing Burnout in Caretakers
Burnout happens under chronic stress. While caretaking is often rewarding, it can be stressful.
Signs of caregiver burnout include emotional exhaustion to the point of feeling unable to continue, feeling detached from the person being cared for, experiencing negative consequences on your own health, depression, and turning to unhealthy coping mechanisms like alcohol to “get through.”
Resources
Other places to find information and support for caregivers include:
Caregiver Action Network is an online resource to find support, education, tools for caregiving, and other resources.
Caregiver Media Group publishes Today’s Caregiver magazine as well as articles online to provide information, guidance, and support for caregivers.
Well Spouse Association has support groups as well as educational materials and online articles for those who care for a husband, wife, or partner.
Summary
Being a caregiver for someone with MS can be rewarding and challenging all at once. Learning about the disease, talking to the person with MS about their needs, and promoting a healthy lifestyle can help you support them.
While providing care, it’s equally important to care for your own physical and mental health.
A Word From Verywell
While it may seem selfish to take care of your own physical and mental health while you are not the one with MS, you need to remember that if you don’t take care of yourself first it will be hard to take care of another person.
Taking breaks from caregiving and continuing to participate in activities you enjoy can help you take care of yourself while caring for another.
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