What NOT to say to someone living with MS.
You don’t look sick.
But you're doing so well.
At least it’s not…
Everything happens for a reason.
You just need to be more positive.
Such-n-such worked for a friend of mine…
You know, my great aunt’s cousin had something like that. She went quick.
Maybe you need to go on a diet.
You need to exercise more.
If you got more sleep…
It could be worse.
“It could be worse” is the sentiment of concern this morning. My intention was not to talk about this today, but after the last twenty minutes of my life, it just feels right.
I have decided to refinance my mortgage and am expecting an accessor this morning, so of course, I need (want) to present a nice house. After a little light exercise (sorry, Mary and Jane, for not notifying you), I showered and dressed before making that second cup of Carmel Creme in my Keurig.
That’s when you-know-what hit the fan. And the clean kitchen counter. And the spotless ceramic tile floor. And the recently polished kitchen cabinets. AND my clean clothes.
Note to self: Open the lid of the water reservoir before pouring said water into it.
I quickly blotted up my mess and took a deep breath before starting again. That second cup of caffeine was/is paramount to the rest of the day. Not only do I appreciate the treat of specialty coffee, I like the serenity it offers.
Okay, don’t blink; I did not stutter.
That’s when you know what hit the fan. And the clean kitchen counter. And the spotless ceramic tile floor. And the recently polished kitchen cabinets. AND my not-so-clean clothes.
Note to self (again): Open the lid of the water reservoir before pouring said water into it.
So, now the countertop with its assortment of artifacts and unnecessary knickknacks is soaked, along with the front of my black (good choice, Lisa) yoga pants.
I am grateful for no witnesses mainly because of the inevitable and expected accolades to my dilemma:
It could be worse.
I’m not disagreeing with this statement. It certainly could and often has been worse. That affirmation is about as necessary as those dust-collecting knickknacks on the kitchen counter.
So, what does a person say to someone living with an invisible disease? Because, to the everyday Joe, I truly do not look sick. Sure, this immediate situation is a result of negligence, but that doesn’t explain the accompanying tremors muscle spasticity interrupting any kind of steady walking gait to my desk. Or the finger numbness that assures my coffee cup of ultimately holding only half of the original creamy contents once settle my body unsteadily onto the desk chair.
Think about the workout out I just had, so don’t tell me I need more exercise. MS Warriors begin their days facing the physical task of getting out of bed. It’s no small chore.
It’s a human response to the unknown that elicits hurtful comments. I know that, but it doesn’t lessen the pain. I hate the struggle see on my friend’s faces or the uncertainty I hear in their voice. I hate their struggle almost as much as I hate my own.
We’ve all been victims of hurtful remarks. Several years ago, a” family” member loudly commented, “You say you have MS, but I just think you’re drunk.” THAT hurt. As the nonconfrontational individual I am, what could I do but brush it off and go on about the day. She probably thought she was being funny, but considering the alcohol-free nature of the event, the humor was lost on me.
Living with a chronic disease encompasses so much more than the actual medical condition. As the “owner” of chronic disease, it is not only my responsibility to care for myself, but to protect my loved ones. So, basically, our lives are not our own. If that doesn’t make sense it’s because you just don’t get it and will never get it unless you get it.
So, the next time you see me doing the worm across the floor allow me to quip that I am indeed looking for dust bunnies before quietly offering me a hand up. We'll both keep our dignity intact.
If we don’t embrace a positive attitude, moving forward is not possible.
Yes, I have MS, but I love life, with or without the naysayers.
If you’re baffled about a positive approach to conversation, try the following.I particularly like #9.
10 Things to say to someone with a chronic illness
By Gay Falkowski
As a person living with MS, you’ve likely got a long list of things that well-meaning friends and family have said to you that you’d like to never hear again — such as the dreaded “But you don’t look sick.” You know what you don’t want to hear, but have you thought about what you do want people to say to you? Here are 10 suggestions from others who have a chronic illness.
1) I wish I knew what to say, but I care and I’m here for you. Ultimately this is the truth behind any other heartfelt statement so it’s a good all-round sentiment to express when nothing else comes to mind.
2) I believe you. This is one of the most powerful things you can say to someone with a chronic illness such as MS that has invisible symptoms. It’s validating and comforting.
3) Can I bring you food? Or is there a chore around the house I can help with? Doing the dishes or putting together even a simple meal can be a huge energy drain when fatigue sets in, so when others take care of these tasks it can be a big relief.
4) I know how hard you’re trying. This acknowledgment can be a really big motivator to someone who feels as though no one understands how difficult it can be to push through the tough times.
5) Don’t feel bad if you have to cancel plans at the last minute, I understand. Guilt from having to cancel plans because of not feeling well, or not having the energy, is common for people with MS. When someone expresses understanding, it’s a great relief.
6) You look so good, but how are you really feeling? When someone says you don’t look sick, most of the time they think they’re paying you a compliment. It’s nice to hear someone acknowledge they understand you may look good but not feel well.
7) I hope you’re as well as possible. No matter how hard you try to ‘be well,’ a chronic illness limits your well-being. Good wishes that give a nod to those limitations take the pressure off and let you know they ‘get it.’
8) It must be difficult to be in pain or feel sick all the time. The idea is to let someone know you’ve really heard what they’ve told you by reflecting that back to them in your own words. When you actively listen to someone, they feel validated, which is important to people with a chronic illness.
9) I just wanted to check up on you and let you know I miss you! After being out of the loop for a while, it’s nice to know that your friends miss you and think of you — and that they want to be around you whenever you’re up to it.
10) You’re doing everything you can. This one can be such a relief to hear instead of another piece of unsolicited advice. Guilt from feeling like you should be doing more is common, so having someone recognize that you are doing everything you can is uplifting.
Have a great day!
Lisa, Lady With the Cane