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Updated on September 1, 2023
Learning you have multiple sclerosis (MS) can feel overwhelming. Alternatively, it may be a relief to finally get a definitive diagnosis and understand what’s causing your symptoms. However you handle the news, it could come with a great amount of uncertainty.
How will the disease progress? How will it respond to treatment? Will your MS go into remission? If so, for how long?
Fortunately, there are steps you can take to feel more in control. If you or a loved one has been diagnosed with MS, these tips can ease the days, weeks, and months ahead.
Collaborate with your healthcare providers
While there is currently no cure for MS, there are ways to treat the disease and manage its symptoms—and it’s important to take an active role in your treatment.
Treating MS will involve working with a number of healthcare providers (HCPs). These include a neurologist, who will monitor disease progression and decide on a treatment path, which will likely include medication. Your neurologist may use corticosteroids to address relapses, for example, while disease-modifying therapies (commonly referred to as DMTs) may be prescribed to reduce MS activity and slow its progress.
Many people with MS find that seeing a physical or occupational therapist helps them improve or maintain their ability to move, exercise, and perform everyday activities safely and effectively. Physical therapy helps people with MS to retain key physical abilities, such as walking, mobility, strength training, and balance, while occupational therapy focuses on energy conservation to simplify everyday tasks.
Psychologists, psychiatrists, or counselors can help you deal with the emotional and mental challenges of the diagnosis. You will also work with your primary care physician to monitor your overall health and address symptoms or other health conditions that can result from or appear alongside MS.
Decide how to share your diagnosis
Deciding who, what, when, where, and how to tell the people in your life about your diagnosis can be tough. In the early stages, some people may want to limit the discussion to a small circle, until they’ve had a chance to process the news. Others may find it cathartic to talk to a wider group. But it is important to remember that once the information is out there, you can’t take it back.
Consider whether you want to share this information on social media. Think about if you’re ready to tell your employers, as well. Unless you need to request an immediate accommodation, or if your symptoms are interfering with your work, you may want to take your time to research your rights and your options, since a chronic illness can affect your career.
When you do share your MS diagnosis with loved ones, you may find yourself needing to comfort and reassure them that you are okay and getting good care. This can feel challenging, especially if you were expecting to be comforted. A wise way to handle this is by being prepared. Once more, research can come in handy. Be ready to answer questions.
Get help with the paperwork
In addition to working with HCPs, consider the other resources available to you, such as social workers and organizations that advocate for patients with MS. Being diagnosed with a chronic condition often involves a lot of paperwork and coordinating of resources, including medical bills, insurance claims, your rights as an employee, diagnostic reports, medications, and modifications to your home.
MS Navigators is a group of professionals that help people with MS manage insurance coverage, MS education support, wellness strategies, and local emotional support resources in your area. Visit the MS Navigator webpage on the official National MS Society website to learn more.
Look for support
It can help to talk to other people with MS, and there are many ways to get in contact with those who have the condition. Ask your HCPs for recommendations about local support groups, or reach out to organizations like the National MS Society.
There are also many options for one-on-one support. For example, the National MS Society’s MSFriends program can connect you via phone, email, or text to a volunteer who has been in your situation. They may be able to help you understand the changes in your relationships, your healthcare needs, and learning how to live with MS.
Educate yourself about MS
Understanding MS can help you feel more in control. Take the time to learn about how MS affects the body, how treatments work, what’s on the horizon in MS research, and what other patients have experienced. Connect with other people who have MS, try a local or online support group, and know that you aren’t alone on this journey.
