When you receive a diagnosis with an unpredictable condition like multiple sclerosis (MS), there are many things your doctor will help prepare you for. Yet, it’s impossible to prepare for the many silly, stupid, ignorant, and sometimes offensive things people will ask you about your illness.
“You don’t even look sick!” is something people say to me about my sometimes invisible illness — and that’s just the beginning. Here are seven questions and comments I’ve fielded as a young woman living with MS.
Fatigue is one of the most common symptoms of MS, and it tends to get worse as the day goes on. For some, it’s a constant battle that no amount of sleep can fix.
For me, naps just mean going down tired and waking up tired. So no, I don’t need a nap.
Sometimes I slur my words while speaking and sometimes my hands get tired and lose their grip. It’s part of living with the condition.
I have a doctor I see regularly about my MS. I have an unpredictable central nervous system disease. But no, I don’t need a doctor right now.
When I say I can’t get up or I can’t walk over there, I mean it. No matter how seemingly small or easy you think it is, I know my body and what I can and can’t do.
I’m not being lazy. No amount of “Come on! Just do it!” will help me. I have to put my health first and know my limits.
Anyone with a chronic disease can probably relate to getting unsolicited medical advice. But if they’re not a doctor, they probably shouldn’t be making treatment recommendations.
Nothing can replace my expert-recommended medications.
I know you’re trying to relate and understand what I’m going through, but hearing about everyone you know of who also has this terrible disease makes me sad.
Besides, no matter my physical challenges, I’m still a regular person.
I am already on a bunch of medications. If taking aspirin could help my neuropathy, I would have already tried it. Even with my daily medications, I still have symptoms.
Oh, I know I’m strong. But there’s no current cure for MS. I’ll be living with it my whole life. I won’t get through this.
I understand people often say this from a good place, but that doesn’t stop me from being reminded that the cure is still unknown.
Just like symptoms of MS affect people differently, so can these questions and comments. Your closest friends might sometimes say the wrong thing, even though they only have good intentions.
If you’re not sure what to say to a comment someone makes about your MS, take a moment to think before you respond. Sometimes those few extra seconds can make all the difference.
Alexis Franklin is a patient advocate from Arlington, VA who was diagnosed with MS at age 21. Since then, she and her family have helped raise thousands of dollars for MS research and she has traveled the greater-DC area speaking with other recently diagnosed young people about her experience with the disease. She is the loving mom of a chihuahua-mix, Minnie, and enjoys watching Redskins football, cooking, and crocheting in her free time.