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A diagnosis of multiple sclerosis comes with a number of questions. For many patients, one of those questions is who to tell about the diagnosis and how to have that conversation. Because MS is a different experience for everyone—and families have different dynamics and communication styles—there is no “one-size-fits-all” answer. Below are seven things to consider that may help you decide on the who, what, when, where, and how of sharing you diagnosis.
Explaining MS
Even if the person you are talking to has an idea of what MS is, it helps to give some background information about the disease: MS is a disease that causes damage to the central nervous system, including the brain.
Explaining symptoms
This may be the most difficult part of the conversation, because MS can cause a wide variety of symptoms, some of which are debilitating and can have a major impact on a person’s quality of life. Symptoms can include fatigue, pain, numbness or tingling in the limbs, changes in bladder and bowel control, difficulty with balance, loss of mobility, vision changes, issues with memory and concentration, and emotional changes, such as mood swings and depression.
But as mentioned above, MS is different for everyone. Symptoms can range from mild to severe, and symptoms and progression will vary from person to person. The unknowns and unpredictability of MS can make it difficult to explain a diagnosis when talking to friends and loved ones who will want definite answers and reassurance. You may want to begin by saying something like, "MS can cause many different symptoms, and it is different for everyone, and I don't know exactly what all of my symptoms will be, or how they will progress.”
Explaining relapses
There are several different types of MS. Some types—including the most common form of MS, relapsing-remitting MS (or RRMS)—follow a pattern of relapses and remissions. Relapses are also called attacks, flare-ups, or exacerbations, and are periods where symptoms get worse or new symptoms develop. These are followed by periods of remission, where some or all symptoms may disappear completely. If you have a type of MS where you will experience relapses, you should discuss this with your loved ones, because symptoms can vary greatly from week to week or even day to day, which can be confusing.
Explaining treatment
There is no cure for MS, but there are therapies that can treat relapses, help prevent relapses, and help slow the progression of the disease. There are also treatments that can help with the symptoms of MS—such as pain or loss of mobility—and help people with MS maintain and improve their quality of life. Treating MS will involve working with a number of healthcare providers, including a primary care physician, a neurologist, and a physical therapist. Because MS is different for every person, treatment plans are highly individualized—though you may share the core treatment goals, your treatment may vary considerably from someone else with MS, and it is also important your loved ones know that.
Sharing with children
Sharing a diagnosis with children can be challenging. The key things to keep in mind are to make sure your explanations are age appropriate—explaining MS to a child that is in grade school is much different than explaining to a teenager—and encourage them to ask questions. Explaining symptoms are important, as kids may have a difficult time understanding the emotional, physical, and mental changes that many patients with MS will experience. If you’re stuck on how to approach the conversation, remember there are resources available. Much has been written on the topic of explaining MS to children, and just as there are support services for patients with MS, there are also support services for children and loved ones of patients. Counseling or therapy may also be helpful.
Sharing with your employers
Because the diagnosis of a chronic condition like MS can impact you career, you’ll want to carefully consider when and how to share with your employers. If MS is not going to impact your ability to perform your job in the immediate future, consider waiting to disclose your diagnosis until it is time to request an accommodation. Before disclosing, do some research to know your rights as a patient—patient educators and advocates can be a great resource.
Sharing online
Deciding to post about your diagnosis is not a decision to take lightly. Once information is shared on social media, such as Instagram or Facebook, expect that word is going to spread. Spend some time reviewing your privacy settings, and take the time to learn how the information you share will be used—for example, will the site or service use that information for marketing purposes. Also consider if you are ready for the attention. Remember, if you are looking to connect with people, there are many options that are less public, including online forums and support groups.
