Things I Love to Hear with MS

Recently, I wrote about the things that I hate to hear with regards to my MS. The aggravating little phrases that people love to spout out to folks with a chronic illness like MS. Words have meaning and they demonstrate a tremendous amount about how someone else sees you. Hopefully, I did a decent enough job explaining why those things annoy me. There is a flip side though, there are some things that people say to me that I love to hear.  Phrases that demonstrate a level of compassion and understanding that is extremely refreshing to someone with a chronic illness.

“I’m stopping by ______, can I pick up anything for you?”

Everyday activities can be tough for someone with a chronic illness. Even if they aren’t disabled, every little activity often still contributes to fatigue. So it’s incredibly helpful if someone can help eliminate some of those mundane, but exhausting, chores. Stopping by the store, places that serve food, or even just coffee and offering to pick up something for someone with a chronic illness can be a real game changer. In my case, I always feel super guilty about accepting help, but if someone is already going to be going there anyway, it feels like I’m less of a burden.

“I’m sorry to hear that, you’ll be missed, but I understand”

People with MS have to cancel their plans a lot. It feels absolutely awful to have to cancel all the time, but our bodies are unpredictable. We can be fine one minute and feel awful the next. Sometimes, I’ll take a shower to get ready to go out, and the shower will wipe me out. It means so much to hear that people understand this, as opposed to being upset at me for canceling.

“Hey, what’s up?”

It’s okay to check in on your friends who live with a chronic illness. We don’t always get out much, so an occasional text reminding us that we aren’t alone and that someone remembers us can be incredibly comforting. Never be afraid to reach out to us (but also understand that we may not respond right away).

“Feel free to vent”

It’s nice to be able to vent and get our thoughts and feelings out there. It’s particularly nice if someone encourages us to do so without trying to solve our problems. I think this is true whether you have a chronic illness or not. Nine times out of 10, people just want to be heard. Sadly, too many people listen in order to respond, instead of really listening to hear, instead of being there for someone. It’s incredibly nice to have someone who knows they can’t truly understand allow you to explain your problems, to get them out.

“Some of us are _______, I realize that may be difficult for you, but I wanted you to know that you are invited”

As hard as it is to admit, I have limitations because of my illness. Particularly in the summer, because of the warm temperatures. I also live by the beach and have plenty of friends who like to hang out there in the summer. It’d be pretty awful (even dangerous) for me to do so. Even though I would likely decline it, it’s still important to me to get an invite, even more so when it’s prefaced with the fact that they understand I might not be able to go. Invitations are important, even if you know the outcome.

“I was reading about your illness”

The number one thing that makes me feel good about a relationship (family, friend, or other) is when they say they’ve been reading about MS. Nothing jumps out and shows that they care about me more than that. I even love it when they ask me questions about how the illness affects me, after they’ve done their research. Seriously, it warms my heart!

What are some things that you like to hear?

Thanks so much for reading and always feel free to share!

Devin

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