When you’re going through something that your friends and family don’t understand, they don’t always know what to say. Sometimes it can feel like they’re being insensitive, uncaring, or downright rude.
We asked people who are living with multiple sclerosis (MS) to tell us about the most irksome things people they know have said about it. Here’s a sampling of what those people said… and what they could have said.
When you tell people with MS or other chronic “invisible” illnesses that they don’t look sick, they may feel like you’re dismissing their illness or accusing them of faking it. You can’t tell how someone with MS feels by the way they look. Telling them that they look good is a compliment, and asking how they feel acknowledges their reality.
MS isn’t easier on the young, nor is it more likely to get better. Imagine being in the prime of your life and dealing with unpredictable neurological symptoms. The realization of having a chronic illness at a young age may be overwhelming. It’s better to simply offer your emotional and practical support.
If you don’t know the facts, it’s best not to make assumptions. If they’re open to it, ask questions. Otherwise, take a few minutes of your time to learn the basics. MS is not contagious. In MS, the immune system mistakenly attacks myelin, the protective substance that surrounds nerve fibers. Over time, this causes lesions to form in the central nervous system. What sets off that process is unclear, but it may be a combination of things. Some avenues of research include genetic predisposition, infectious agents, and environmental factors.
There’s no quick fix for MS, and treating it can be complicated and costly. It varies from person to person, and sometimes treatment has to change as symptoms do. Some injectable disease-modifying drugs and some medications in pill form are designed to slow disease progression and cut down on the number of relapses. Some people with MS use other medicines or therapies to deal with individual symptoms. It’s best to follow your friend’s lead in discussing treatment for MS.
People with MS are bombarded with stories about other people with MS, including the ones who climb mountains and run marathons and the ones who can’t get out of bed or walk without assistance. But since MS is different for everybody, there’s no point in comparing your friend’s MS to someone else’s.
MS, particularly the relapsing-remitting type, can change a lot from year to year, month to month, and even day to day. A person with MS can look perfectly healthy and strong one week, but be unable to put one foot in front of the other the next. Remission doesn’t mean that MS is gone for good or that it was an incorrect diagnosis. On again, off again symptoms are common in MS.
Don’t say this, or anything like this. It’s presumptuous and hurtful. You’re just piling on the guilt.
It’s not a competition. Your friend has no say in whether or not you get approved. Asking why they got approved suggests you question their honesty about their disability.
It’s better to talk about the benefits of exercise without offering false hope. If your mom had MS, she likely still has it. Exercise, diet, and other lifestyle factors are important for people with MS. Making healthy choices can help you stay strong, bolster overall health, and improve some symptoms of MS. But it’s still not a cure.
Chronic sleep disorders (CSDs) and chronic fatigue are common among MS sufferers. But needing sleep doesn’t necessarily mean it’s easier to get. And a good night’s sleep doesn’t necessarily trump the overwhelming fatigue that comes with MS.
When someone talks about their struggles with MS, it doesn’t mean they need a life lesson or that they don’t have perspective. Things could be worse; things could be better. But what they have is MS. It’s what they’re dealing with right now and it’s a huge part of their life. Let them talk about it without making them feel small — because MS is not small.