Managing your life with MS isn't just about dealing with the symptoms you have right now. It's about thinking through what could happen in future -- the possible effects on your job, family, and finances -- and preparing for them.
Even if your symptoms are mild, planning can make you feel better and be more confident in your future.
"It's not bad luck to think about what you might do if your symptoms got worse," says Rosalind Kalb, PhD, a clinical psychologist and vice president of clinical care at the National Multiple Sclerosis Society. "That's not giving into the disease -- that's taking charge of it in a productive way."
1. Face Your Fears.
When it comes to planning for the unpredictable, where do you begin? "Start where your greatest fears are," Kalb says.
Could MS prevent you from working? Could it disrupt your family? Whatever worries you most about the condition, tackle the fear head on.
"Instead of letting those worries go round in your head, start building a safety net that would deal with that problem," Kalb says.
2. Check Your Insurance
Make sure your doctor is covered and that you have access to specialists, such as neurologists. Even if you don’t need other treatments now, like physical or occupational therapy, you might need them in the future, so check what's covered, Northrop says.
You can also get help from MS Navigators at the National Multiple Sclerosis Society. They can help you understand your options. To talk to one, call 800-FIGHT-MS.
3. Talk to Your Family
"Most people don't really understand MS," says Kalb. Let them know how MS might affect you and how they can support you.
"A lot of family and friends want to help but don't know what to do," Kalb says. Be specific when you ask for help: a ride to a doctor's office on Tuesday, an after-school pickup next week. That helps them know exactly what you need and want.
4. Take Stock of Your Finances
Life with MS can get expensive. Copays for medications, tests, doctor visits, and home help all add up. Meanwhile, MS might restrict your working hours and reduce your income.
No matter what your financial situation is, meeting with a financial advisor or accountant is a good idea. An expert can give you a sense of how much you might need to put away. You'll also get advice on ways to save money, such as possible tax deductions on home renovations you may need.
5. Assess Your Home
If your symptoms ever became a problem, could you keep living in your home? Would it be possible to live on the first floor? Could you add a ramp if you needed to? Are there other adjustments you could make? It's worth thinking through, Kalb says.
You should also think about where you live. "If you're in a really rural, isolated area, you might not have access to services that could help," Northrop says.
6. Consider Your Career
After diagnosis, lots of people with MS stay at the same job without any problem. But it’s worth considering how MS could affect your career in the future.
For instance, if your job is very physical, could you shift to something less demanding if your symptoms got worse? And in any job, would training in a different career make you more confident about your future?
7. Reach Out
Connecting with other people who are dealing with MS can help, too. Support groups can provide connections.
"Other members may talk about a good financial advisor or a contractor who will install grip bars," says Northrop. "Write down that information and keep it in a file." Such recommendations may come in handy.
8. Take Your Time
If you have MS, it's important to plan. But don’t rush into any big decisions.
"Don't give it more of your energy and resources than it deserves," Kalb says.