When you first learn that you have multiple sclerosis, you will likely experience a range of emotion from relief to fear. Then come the questions.
One of the first might be “What is my prognosis — what is a typical case of MS like?” The hard answer is that prognosis is all but impossible, but along with that uncertainty comes hope. Undoubtedly, you will hear horror stories about MS as well as uplifting stories about people living strong, healthy lives. The fact is, life with MS is unpredictable. That’s about all one can predict about it.
The trick is to share and learn from other people with MS without falling into the trap of comparing yourself to them. If you’ve just recently been diagnosed with MS, waste no time in putting yourself in the driver’s seat.
Self-educate. Make sure you understand what MS is — and what it isn’t. Don’t wait for someone else to tell you everything you need to know. It is your responsibility to learn all you can about MS. (Related Reading: Basics to Understanding Multiple Sclerosis)
When in the doctor’s office, don’t be afraid to ask questions. Do some research on your own. There are many national MS advocacy groups, books, and reputable websites that provide information and guidance. This education should be ongoing — always be open to new information.
Decide who you will tell. There is no rush to make this decision, so take your time. You need to consider your spouse and other close family members whose lives may be affected, but reaction will be varied and unpredictable. They, too, will need time to adjust.
There is no legal obligation to inform employers or co-workers about your medical status unless you plan to request special accommodations. Before making such a request, learn your rights under the Americans with Disabilities Act. If your work is not affected by your illness, use caution in sharing personal information in the workplace. An unfortunate side effect of chronic illness is that other people’s perceptions of you may change.
Research both conventional and complementary alternative medicines. Learn about the available disease-modifying, injectable medications. These drugs are extremely expensive and rely strongly on patient adherence. Take the time to understand them so that you can intelligently decide whether or not they are right for you. Ongoing research and clinical trials for oral medications show great promise.
Pledge to make changes. If you want a fighting chance against MS, you will need to assess your lifestyle choices. The stronger and healthier you are overall, the better you can deal with and recover from symptoms. Find out what foods contain the essential nutrients your body needs. Eliminate empty calories, highly processed foods, smoking, and excessive use of alcohol.
Depending on your symptoms, exercising with MS can be quite a challenge, but it’s not impossible. There are many exercise programs designed specifically for people with MS. Swimming and yoga are often recommended to MS patients. Learning to relax and get plenty of rest is also part of the package. Pay attention to the signals your body is sending you.
Take control. Don’t allow pride to get in the way of availing yourself of assistive devices that can help you lead an active life. Make whatever adjustments are necessary to maintain your independence. If you have difficulty walking or standing for more than a few minutes, you might want to consider applying for a parking placard.
Forget about MS stereotypes. You needn’t feel pressure to be a hero or an object of pity. You are not all about MS, you are just a person who happens to have MS. Learn to live around it, through it, with it, and despite it. You are still uniquely you.
Reach out when MS gets you down, don’t hesitate to reach out to other people with MS. There’s nothing quite like the realization that you are not alone in this thing. When you are back on top, reach out again, and let someone lean on you.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.