Nurses play a critical role in contributing to the treatment of patients, and, for many, effective management of a disease requires well-rounded support. Caring for people living with multiple sclerosis (MS) has always been of particular interest to me because of the holistic approach to managing the disease. A multidisciplinary team comes together for the benefit of the patient and, in some cases, their care partner, too. This type of support system is vital to the successful management of MS, and nurses play a key role as part of the multiple sclerosis care team.
About multiple sclerosis (MS)
While the exact cause of multiple sclerosis is unknown, it is believed that the body’s immune system attacks the central nervous system, disrupting the flow of information within the brain and spinal cord, and between the brain and body. MS is an unpredictable disease, with symptoms that vary from mild to severe and can be different from day to day and from patient to patient. Symptoms can take a dramatic toll on everyday life, sometimes causing people to lose their ability to read, think clearly, or even walk. This range of physical and emotional symptoms can alter daily life and requires as much support and encouragement as possible.
Supporting MS patients
A collaborative approach to managing symptoms is multifaceted and involves a range of healthcare providers working together, including specialty physicians such as neurologists, as well as support from multiple sclerosis-certified nurses, physical and occupational therapists, and social workers. Aside from their healthcare team, many people living with MS also rely on the support they are provided by their loved ones.
Regardless of the size of the day-to-day support system, a strong, consistent team can have a profound impact on disease management, and nurses can play a large role in that support system. As an MS nurse, I provide constant healthcare education and counseling, including just being an ear for people living with MS, so they can understand how to navigate their care and focus on accomplishing things that they truly want. Multiple sclerosis patients do lead productive lives, and support is the key to making that a reality.
I am fortunate to contribute to the support of people living with MS through my work with the MS One to One program. MS One to One is an individualized program created by a pharmaceutical company to provide support for people living with multiple sclerosis and their care partners—whether a person is newly diagnosed or has had MS for years.
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Dedicated care
MS One to One nurses are certified in MS nursing and are available 24/7 to speak to patients and their care partners. Those enrolled in MS One to One also have their own dedicated nurse; each time patients call, they speak to their dedicated nurse. Therefore, MS patients do not have to tell their story over and over again to a new nurse each time they call. As a result, patients develop trusting relationships with their nurse, allowing for meaningful one-to-one conversations in which patients feel safe to share their feelings and challenges, and to accept guidance from their nurse.
The most rewarding part of my work is when I know I have made a difference in the life of a person living with multiple sclerosis. Serving patients and easing their burden, no matter how big or small, is an honor and a gift. That is only possible through the trusting, one-to-one conversations that happen every day at MS One to One.
Thriving with multiple sclerosis
For any nurses who are caring for people living with chronic illnesses like MS, I have a few words of advice that you can pass along to your patients:
Get educated
Take time to educate yourself about the disease and treatment options. Talk with a healthcare professional and others who have MS. Check out online resources from credible sources, such as MS advocacy groups and MS One to One. For ongoing updates about MS One to One, visit their Facebook page.
Assemble a multiple sclerosis care team
Surround yourself with those you can trust with your physical and emotional needs. Ask for help.
Communicate
When talking to others about multiple sclerosis, keep in mind that one explanation may not work for everyone—depending on who you are talking to:
- Family: Tell those closest to you that you have MS. You are going to need their support.
- Friends: Start with the friends you feel most comfortable with, and then decide, over time, how much you want to share and with whom.
- Colleagues and employers: Before disclosing your MS in the workplace, you may want to learn about your rights under the Americans with Disabilities Act (ADA) and think carefully about the pros and cons of sharing personal information.
- Healthcare provider: Be honest with your healthcare provider about what you’re experiencing, both physically and emotionally. Ask questions, and take someone along to healthcare provider appointments to help you remember what was discussed and to ask questions.
Stay Positive
A positive attitude is important, and always talk to your healthcare provider if you have questions about depression. Set goals that are important to you and that help you feel a sense of accomplishment. Lastly, have fun! Taking part in social activities you enjoy can reduce stress and help with overall health and well-being.
Editor’s note: This post was originally published on August 24, 2016 and updated on March 3, 2021.
