How to Build a Personal Multiple Sclerosis Support Network
All of the knowns and unknowns of multiple sclerosis (MS) make it a difficult condition to cope with. For starters, there’s the variety of symptoms caused by the neurological disease. Symptoms may come and go, and there’s no way to predict how the disease may progress, since no two people experience it the same way.
Also, it’s normal to feel grief or a sense of loss when you have MS, says Emily Smith, a licensed clinical social worker and manager of case management for the National Multiple Sclerosis Society (NMSS). This is especially common “when trying to grasp a new diagnosis, or when there is disease progression, or changes such as loss of mobility, or changes to employment.”
Establishing a multiple sclerosis support network can help—no matter what challenge you're facing. “Often people think of the physical symptoms related to MS, but the cognitive and psychosocial [effects] can be just as impactful, so it’s important to tend to those symptoms, as well,” Smith says.
When it comes to finding MS support, there are various options to consider. “It's helpful to think across the types of support—tangible support for materials and services, information-level support, emotional support, and social support,” says Kevin Alschuler, Ph.D., psychology director and director of rehabilitation research at the UW Medicine Multiple Sclerosis Center in Seattle.
“And for most people, that all can't come from one person,” he continues. “So, a big thing for us is to try to help folks build out a support network … to fill out that support picture for that individual.”
5 Steps to Building Your Multiple Sclerosis Support Network
To round out your personal MS support system, follow these five steps.
1. Build a Comprehensive Medical Team
“The model of comprehensive MS care involves the expertise of many different healthcare professionals—each contributing in a unique way to the management of the disease and the symptoms it can cause,” says Hope Nearhood, director of MS information and resources, advocacy, and healthcare access for the NMSS. Your ideal team may include the following specialists:
- MS nurse
- Primary care provider
- Mental health provider, such as a psychologist, psychiatrist, and/or social worker
- Rehabilitation therapist, such as an occupational therapist, speech therapist, and/or physical therapist
- Wellness professional, such as a nutritionist and/or personal trainer
- Other healthcare specialists, such as an ophthalmologist, a gynecologist, and a urologist
This type of comprehensive, coordinated care aims to manage the disease and promote all-around wellbeing, including “comfort, function, independence, health, and wellness,” Nearhood says.
You can ask your doctor for referrals to any specialists you’re considering adding to your MS care team. Or you can search online for providers near you through organizations like the NMSS.
2. Find Help at Home
You may enlist the help of your significant other, friends, and family members—care partners—to help you with day-to-day tasks. “A care partner may provide … assistance with activities of daily living, like scheduling appointments, taking on additional tasks in the home, or providing physical assistance with transferring, bathing, or dressing,” Nearhood says.
It’s a good idea to enlist several people into your multiple sclerosis support network who can have different roles in your care. If you’re looking for additional help outside of your care partners, the NMSS can also help you search for resources near you.
3. Seek Out Social and Emotional Support
Your network of family and friends can give you an emotional lift, but you could also consider an existing multiple sclerosis support group as another key source to add to your network.
“There's a certain level of support that we all get from being around people who are experiencing things similar to us,” explains Alschuler. “They can understand things in a way that maybe other people can't.”
You can meet other people with MS in a variety of ways:
- Finding a local multiple sclerosis support group or meetup near you
- Signing up for an MS volunteer opportunity or fundraiser
- Networking through MS organizations
- Joining groups on social media platforms like Facebook
- Connecting with others here in the MS community
If you can’t shake negative feelings and have lost interest in things you normally love to do, you may be experiencing depression—which is common in people with MS. “Mental health concerns can be a result of the disease process itself, which leads to physiological changes, and [a result of] psychosocial changes such as changes in friendships or in intimate relationships,” Nearhood says. That makes social and emotional support all the more important.
If you think you may have depression, you should also talk to your doctor about what you’re feeling. They may recommend speaking with a mental health professional, as well.
4. Inform Yourself and Others
Fortifying yourself with accurate information can help you feel more empowered to live your healthiest life. When others know more about your MS, they may be better able to support you, as well.
There’s a lot to learn about MS, and research on the condition and potential new treatments is ongoing. You and your loved ones can stay on top of the latest MS news through a variety of reputable organizations:
- National Multiple Sclerosis Society
- Multiple Sclerosis Association of America
- Multiple Sclerosis Foundation
- Multiple Sclerosis Coalition
- Can Do Multiple Sclerosis
You can also find medically reviewed articles and other content that can help you understand MS on our site and app.
5. Know Where to Start
It’s never too soon to start wading through all these options and finding the right sources of support that suit your needs. If you’re not sure where to start, try connecting with a National MS Society MS Navigator for help in finding resources you may benefit from.
Even when you’re feeling well, it’s still a good idea to have a multiple sclerosis support network in place and know who to turn to if the going gets rough. “MS can be an unpredictable illness,” Smith says. “Knowing you have support or somewhere to turn for it can not only assist when the need arises but also decrease some of the anxiety related to living with an unpredictable chronic illness.”
You May Also Like:
Want to Read More?
Access all of Twill Care’s content, community, and experts for free!
Already a member? Login