Explaining MS symptoms to people who don’t get it

How many times have you heard, “you don’t look sick”?

It’s easy to understand why this happens—the symptoms of relapsing multiple sclerosis (MS) are not always easy to spot. For others to see and understand what having MS is like, they have to look past the surface. The effects of MS go beyond just skin deep, and it may be difficult for others to believe that you have a lifelong condition when you mostly look like everybody else.

Telling your MS story is a decision that lies completely in your hands. If you have recently been diagnosed, it may be difficult for you to open up—it’s a lot to process after all. But it’s important to take things at your own pace and share however much you want, when you want. Remember that friends and family want to be there for you and want to offer you their support—and they may want to know more about MS than you think. Tell them how much support you want and how they can best support you.

Explaining the symptoms of MS can be tricky in that others may not be able to see how it affects you. Describing certain symptoms that stem from feelings and relating them to everyday things can help you connect, especially with children. Sticking to simplified explanations is most effective. Here are some examples:

• Fatigue. “Let’s say you stay out till 2 AM and then get up and go to the gym at 6 AM—you must be exhausted. For me, it’s as if I never went to sleep and then did a triathlon—the exhaustion touches every fiber and bone in my body.”
• Numbness. “Imagine the feeling you get after sitting cross-legged, with the pins and needles after getting up. But let’s say you sat like that for 3 hours straight and then tried to get up…that’s what MS feels like.”
• Difficulty walking. “You know what it’s like trudging through knee-deep water? Now picture trying to do that with giant shoes on and weights strapped to your ankles.”

MS affects everyone differently, and you may not experience the same symptoms as others. If you have any questions about your symptoms, please be sure to speak with your healthcare provider. Focusing on what you are feeling as opposed to the whole list of possible symptoms can help you personalize your explanation. Most importantly, MS can be unpredictable, and flexibility is important when managing it. Some days will be better than others, and asking others to “go with the flow” will help make things easier on everyone. Some may be inclined to jump to your aid if they see you slowing down, but be vocal about when you do and don’t want help, and to what degree.

This is your condition, and how you share it with others is your decision alone. However you explain it—you are in control!