What I’d Like to Hear You Say
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There are so many things that people might inadvertently say to those of us living with a chronic illness that can make our heads feel like exploding. Too often our friends and loved ones want to give us encouragement, but instead they might unintentionally offend us, make us angry, or demonstrate that they don’t understand.

It’s hard to feel good about yourself

When you live with a chronic disease such as multiple sclerosis, it becomes difficult to feel good about yourself and about your situation. When someone says, “but you look so good” or “you don’t look tired or sick at all,” he may not be saying that he doubts how you feel. He might really be trying to make you feel good.

While we want others to be understanding and empathetic, it’s important to hear their comments with our own understanding ears. Actually, we might need to learn how to listen… but that’s a topic for another day.

Several friends and family members of persons living with MS who participate in our community have asked for information about what they SHOULD say to someone with MS. There is a desire to flipflop the average “what NOT to say” topic into a “how to support someone with MS”-style article.

When I first thought about this, I tested different phrases on myself. It was not easy to come up with prescribed words to suggest how you, the reader, should speak to your friend or loved one with MS. So, I turned it around and instead want to share some phrases or questions I’d LOVE to hear from those around me.

What to say

“I don’t have MS, so I don’t know exactly what you go through, but I’d like to learn more. How does MS affect you?”

“How can I help? Please let me know.”

“I understand that how you look might not match how you feel. Would you like to talk about how you’ve been doing lately?”

“We’ve love to have you [join us, meet us, attend an event], but if something comes up and you aren’t able to, we will understand. No pressure; just let us know in case we can make other arrangements.”
“Is there anything I should know, or something I might not have thought of, that will make it easier for you to participate?”

In response to a comment such as “I’m so tired today.”

“I’m so sorry that you are feeling this way today. I don’t like feeling tired either, but I know that my ‘tired’ is not quite the same as your ‘tired.’ I hope you feel better tomorrow.”

Or simply, “I’m so sorry that you are feeling this way today. I hope you feel better tomorrow.”

What do each of these statements have in common?

They demonstrate an openness to listen to the person and show that you want to engage with the person in a way that supports his/her needs. They do not suggest that the person with MS should do something specific to ‘fix’ their disease or make it better. They also do not try to show empathy by stating you understand the person’s situation just because you experience something similar. Instead, these questions/statements express an understanding that you don’t really know, but that you sincerely care enough to learn.

-Lisa

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