If you are living with nonrelapsing secondary progressive multiple sclerosis (nrSPMS), you may need additional help during your journey with MS. Tasks that you once were able to do on your own — cooking, cleaning, driving your car, and more — may now be out of reach for you or become so in the future.
Why It Can Be Hard to Ask for Help
Asking for the help that you need is not easy. There are a lot of reasons why you may be uncomfortable asking others for assistance, and it’s normal to feel that way, says Lucille Carriere, PhD, a staff clinical psychologist supporting the Mellen Program for MS at Cleveland Clinic Nevada in Las Vegas, Nevada.
You don’t want to lose your independence
“Everybody values their independence and autonomy, and asking for help may seem like a threat to your personhood,” Carriere says. “It can be incredibly challenging to recognize that you need to ask for help.”
You don’t yet know what help you require
As you are first coming to terms with your illness, you may not yet understand what you need.
“You may have difficulty recognizing or accepting the extent of your disability because it takes time to accept that this is happening,” says Mirza Omari, MD, MPH, a neurologist at NYU Langone Health’s Multiple Sclerosis Comprehensive Care Center in New York City, NY. “You may feel that you’re not in your own body. My patients tell me this all the time.”
Your illness may affect your understanding of what you need
Also, nrSPMS can affect the way your brain works. Your memory, for example, may not be as good as it once was. That can lead to trouble seeking help.
“You may forget between visits to your doctor what it is that you're having concerns with and need help with,” says Amy Gutierrez, MD, a neurologist with the Orlando Health Neuroscience Institute Neurology Group in Orlando, Florida.
You don’t want to burden others with your needs
You may shy away from seeking help because you think it’s asking too much.
“Individuals with secondary progressive MS don’t want to be seen as a burden to those they love,” Carriere says.
The Types of Help You May Need
Your disease will affect both your physical abilities (such as your mobility) and your cognition — your brain’s ability to plan, problem solve, remember, organize, and perform other thinking skills. It can also cause fatigue, disrupting your ability to get things done.
However, nrSPMS affects everyone in different ways as it advances over time, Gutierrez says. Your specific needs won’t be the same as someone else’s with nrSPMS. And what you need help with now will change over time.
Some areas where you may need help include:
- Household tasks. Cooking, cleaning, laundry, and other chores can be difficult due to symptoms such as fatigue and mobility problems.
- Getting yourself places. If your symptoms limit your ability to drive, you may need help with getting to and from appointments, your kids’ school activities, grocery shopping, and similar outings.
- Staying organized. MS, including nrSPMS, affects your cognition, which can make it difficult to plan and remember. This can get in the way of taking your medications on schedule, going to appointments, paying bills, and more.
- Moving around your home. Mobility issues — as well as obstacles in your household — can make it hard to move around your home. You also may need help bathing and using the toilet.
To figure out where you need help, you may need guidance. If this is a new diagnosis, you may not yet understand all the ways your nrSPMS is affecting your life. Talk to your doctor, who can assess your needs.
“Your doctor is your first resource,” Omari says.
Getting Used to Asking for Help
If you don’t feel comfortable asking family or friends for help, remember that it’s completely normal.
“It is going to be uncomfortable, and that’s a normal part of this,” Carriere says.
She recommends a few steps to make it easier.
Start with smaller tasks
“At first, try asking for help with smaller things rather than something really big,” Carriere says. “This can ease you into asking for help and let you find the right words for your requests.”
Make some tasks a team effort
When you have a task that you can’t do on your own, you may not have to leave it entirely in a caregiver’s hands.
“Ask yourself if it’s something that you and your caregiver can do together,” Carriere says. “That way, it does not feel like it’s taking all of your autonomy.”
For example, you and your caregiver could organize your pill box together. When it comes to making appointments, you could make the call, and your caregiver could put it on your calendar.
Know your most important needs
Think about the areas that are both challenging and important to you, and ask for help with those first.
“Tie your requests to things that are really meaningful to you, that are going to benefit you from day to day,” Carriere says.
Who to Ask for Help
For some people with nrSPMS, family and friends provide a lot of help, but not everyone with the disease has such relationships.
“I don’t consider them a first option, as it’s a complicated dynamic to rely on family members, including spouses,” Omari says. “We want to make sure they have home health aides and that we dip into any possible resource to get them the help they need at home.”
If you have family and friends you can trust to be there for you — also known as informal care partners — that’s great, Carriere says. But early on, you also should consider professional caregivers. By diversifying your care team and spreading the responsibilities among a group, you make it less burdensome for everyone involved, she says. “We often will say to care partners, you know, this job is really not intended for one person.”
Getting help with more private needs
There may come a time when you need help with bathing and using the toilet.
“Ask yourself what’s going to make you feel more comfortable,” Carriere says.
Often, that will be with a partner, but not everyone has a partner or a partner who’s physically able to help. Having conversations about this and making plans in advance, if possible, is recommended, she says. “Prepare for what the future could be.”
You have options
Professionals who can offer help include:
- Rehabilitation therapists, such as physical therapists, occupational therapists, and speech-language therapists, who can work with you on ways to remain safe and as independent as possible
- Mental health professionals, such as clinical psychologists, who can help you with the emotional toll of nrSPMS
- Home health and personal care services, which offer medical care as well as help with tasks of daily life, chores, and companionship
If your care team includes a social worker, talk to them about your needs and who can help you meet them.
“You may have benefits you’re not aware of,” Gutierrez says. “A social worker can look at your situation and see what community resources are available to you.”
And be sure to seek out national resources as well.
“Patient advocacy organizations like the National Multiple Sclerosis Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America also play key roles in helping individuals with progressive MS,” Carriere says.
For example, the Multiple Sclerosis Foundation partners with rideshare apps Lyft and Uber to provide free rides to appointments with your neurologist or infusion centers. The org also offers grants to help pay for devices like wheelchairs, home care, and more.
Visit the National Multiple Sclerosis Society to join in-person or online support groups or talk with an MS Navigator who can connect you with resources. They also provide a searchable database of doctors and resources.
Helping Others Understand Your Experience
Those offering you help may, despite the best of intentions, misunderstand your needs. After all, some MS symptoms, such as fatigue and cognition, may not be obvious. It’s not up to you to educate everyone who questions you about your disease, but if those closest to you don’t get it, a serious conversation is in order.
For example, a loved one’s “help” may involve trying to do everything for you, even things you're still able to do.
“Be honest and open with people who step in too much and too intensely,” Carrierre says. “Tell them they are stripping away your autonomy and that that isn’t helpful to you.”
She suggests making a list of the specific tasks requiring assistance and encouraging your helper to stick to it.
And you may encounter people who question your symptoms simply because they can’t see them.
“You can’t really change the way others react toward you, but you can change how you feel and how you react toward that behavior,” Omari says. “Focus on building your confidence. You know your experience is real. Also, focus on all the strengths that you have and recognize that everybody has to ask for help at one point or another in life, especially with a chronic disease.”
