Next Steps after an MS Diagnosis - dummies

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Following a major life change like being diagnosed with multiple sclerosis (MS), figuring out what to do next can be tricky. Some people worry so much about making the right choices that they find it difficult to make any at all. Here are some suggestions for getting started.

MS next steps: Catch your breath

People diagnosed with MS may do a surprising number of things during their first moments of shock — quit jobs, leave relationships, tell the world about the diagnosis, decide never to have children, and so on. Consider yourself forewarned: You need to give yourself time to explore the disease and live with its ups and downs before deciding to change your life. You may be surprised to discover that you really don’t have to change much at all.

Too many people resign from their jobs (“I’ll never be able to do this kind of work any more”) or break off engagements (“I could never saddle the person I love with my MS”) in the throes of an early exacerbation, only to find themselves jobless and bored to tears — not to mention lonely — when the MS goes into remission. So, give yourself a chance to get to know your MS a bit before taking any drastic steps.

MS next steps: Talk with your neurologist about treatment

It can’t be emphasized enough how important it is to consider early treatment with one of the approved disease-modifying therapies — before significant, irreparable damage can occur. So, broach the subject with your neurologist as soon as possible. Your doctor can help you figure out if you’re a good candidate for this kind of treatment and which one of the medications may be best for you.

To find out more about the importance of early treatment and the role of the disease-modifying therapies in managing your MS, check out the National MS Society’s brochure on treatment options.

MS next steps: Begin talking with the people in your life

The quickest way to feel less alone with your new diagnosis is to begin talking about it with others. However, figuring out whom to tell, and when to tell them, isn’t always easy. Some people — particularly those who have been waiting for some time to get a diagnosis — want to rush out and tell everyone they know that the mystery has finally been solved. Other people, however, tend to want to keep it a secret, telling no one or as few people as possible. The most reasonable approach is probably somewhere in the middle.

Try picturing yourself surrounded by circles of gradually increasing size. Your best bet is to start by talking first with those in your “inner circle,” and then gradually working your way outward on a need-to-know basis.

In general, sharing information with your partner, your best friend, your parents — whomever you feel closest to — is the place to start. Because they know you well enough to sense when something is wrong even without you telling them, they can help you begin the process of living with MS. In turn, you can help them understand what the disease is all about.

There are no hard-and-fast rules about how to share this information with others, but keep in mind that each person’s reaction will be different. You need to be prepared to deal with their feelings (as well as your own) and to provide some basic information about the disease.

Deciding who else to clue in can be tricky, especially in the workplace — mostly because spur-of-the-moment decisions about disclosing your MS can have long-term implications, particularly in relation to your current job and future career options.

The point is that once the information is public, you can’t take it back. You may, for example, want people to know that MS is causing all of the symptoms you’re experiencing. But, if the disease goes into remission and your symptoms get better, you may wish you hadn’t told so many people — particularly your boss or co-workers whose attitudes about chronic illness or disability are likely to impact their interactions with you over the long term.

For more help with your disclosure decisions, check out the National MS Society’s publication, “Disclosure: The Basic Facts,” as well as its handy tool to help with disclosure decisions in the workplace. For now, here are some pointers:

  • Give yourself and those closest to you some time to get used to the idea before trying to figure out who else needs to know.

  • Even though you may want your co-workers to know what’s going on, think through what you want them to know and why you want them to know it.

  • If you have children, be sure to keep them in the loop. Not only does doing so help them understand what’s going on, it also ensures that they hear this important information from you rather than from a well-meaning relative or friend who accidentally spills the beans.

  • If you’re currently dating, you don’t have to disclose your diagnosis the first time you meet someone. But don’t wait until you’re walking down the aisle either.

MS next steps: Make a commitment to your health

Sometimes people get so bogged down thinking about or dealing with their MS that they forget that MS is only one aspect of their overall health and well-being. Like getting a tune-up and checking the air in your tires before a big trip, being healthy and fit is the best possible preparation for your MS journey. The better you feel, the better able you’ll be to manage your MS.

MS doesn’t provide any magical protection against other common health problems, so it’s just as important for you as it is for everyone else to choose a healthy lifestyle — including regular checkups, good stress management strategies, a balanced diet, and adequate exercise and rest.