Relationships & Support

I recently saw a post on Facebook written in response to hurricane relief efforts. I don’t remember where the post came from, but I remember that it said something about how people “are really good at acute compassion, but pretty bad at chronic empathy.” As someone who lives with multiple sclerosis (MS) every day, this really struck a chord with me.

When I was diagnosed with MS, I got the usual cards, flowers, and casseroles, but those seemed to tail off over time. But MS doesn’t tail off. I live with it every single day. I understand that diseases can make people uncomfortable, but please don’t back away because you feel helpless. What many of us really desire is very simple. And all it takes is a few words.

Find tips on having open conversations with your friends and family.

Here are 3 things you can say to someone living with a lifelong disease, instead of giving that person a lifetime of casseroles:

1. “What is it like?”
One of the things that makes chronic illness difficult for people to relate to (despite most of us knowing somebody living with one) is lack of information. The Internet is a treasure trove of resources for nearly every affliction. I recommend learning about someone’s illness on your own, but you can also just ask us.

While I might be shy and vague at first, it’s because I’m not sure if people are genuinely interested in my day-to-day life with MS. But please ask, because we may want to tell you.

2. “What can I do for you?”
Everyone’s specific situation and condition is different. And that means needs can vary. However, one thing most of us living with MS share in common is fatigue. Sometimes my fatigue feels like walking the length of a football field in three feet of snow. Or It’s like escaping quicksand. If you have some free time, ask me if you can go grocery shopping or fold my laundry for me. It helps, I swear!

3. “How are you?”
To me, this is the most impactful thing you could utter. Or better yet, “How are you today ?” My symptoms may vary from day to day, with “good days” thrown in here and there. But even on a “good” day, I may be challenged with my MS symptoms. Many times I just smile and assure everyone that everything is fine. Maybe it’s to blend in or maybe it’s to avoid sounding like a whiner or a burden. Whatever the reason may be, it’s important to be patient with anyone living with a chronic condition like MS.

These three ways to show you care are so powerful for people living with MS, but it’s important to keep them in your back pocket for anyone. They can dramatically turn a person’s day around, and provide some needed support.

Regardless of your situation, you can’t tell what is going on in a person’s life simply by their appearance. Asking these questions can carry more weight than you know. I encourage you to use these questions sincerely and freely—and never underestimate their power.