A woman facepalming with frustration at what someone off-screen is saying.

Things I Hate to Hear with MS

If you follow enough websites that discuss chronic illness, you are bound to come across some lists that detail what folks should or shouldn’t say to those with a particular condition. These kinds of lists are common because those of us with chronic illness hear a lot of the same phrases or points being made very often. Instead of saying what others should or shouldn’t say to me, I’m going to come right out and say what I hate hearing. So please, commiserate with me as I list some of the ones that bug me.

"I know how you feel"

“I forget things, too,” “I’m tired, too,” “I know how you feel.” I’m sure you’ve heard many variations where people point out that they understand your experience because they too have dealt with it. I’m sorry, you don’t. These types of comments, no matter how well-meaning, belittle the experience of the person they are talking to. Being tired after a super long day at work still doesn’t compare to MS fatigue, I’m sorry, it doesn’t. I know, because I’ve actually been through both. It’s never good to compare one’s situation to someone else. You can’t ever truly be in someone else’s shoes.

“Have you tried...?”

How many times have you heard this one? I bet a lot. One of the most common things people with chronic illness encounter is someone suggesting a new treatment. Have you tried this medicine or that diet? Have you tried exercising more? Again, well-meaning, but when you hear it so much, you just want to scream (I do, anyway). The thing I hate about it the most is that it comes off as an assumption that I’m not doing all I can to help myself. It feels to me like they are almost blaming me because I’m not trying everything, that I haven’t thought of everything. UGH!

“Have you heard?”

Have you heard about this new medicine coming out, I hear it can remyelinate and all? Yes, I’ve heard about it because I care about myself and research this stuff. If I haven’t heard about it, it’s of no real use to me yet. Best of intentions here, but when that thing happens a lot, I feel like, "Come on people, do you not think I want to be rid of this disease? Don’t you think I follow every breakthrough with a shred of hope that this is the thing that can help me?" That’s probably the real reason I get upset. Yes, I’ve heard about it, and no, it’s not going to cure me.

“You just need to be more positive”

I’ve discussed this a lot in the past, but pure positivity, sunshine, and rainbows won’t cure my illness.

“My aunt’s gardener’s son-in-law has MS...”

Got it, you’ve heard of my illness and your brain immediately searches for anyone else you might know with it. I get it, it’s natural. The thing is, more than most diseases, MS is such an individual one. Everyone is different, please don’t compare me to however they are doing.

“You look great”

Um, thanks. Nice to hear, but it also tells me that they look at me and the first thing they think of is my disease. That sucks, no one wants to be known primarily for a diagnosis. I am more than my disease. Also, I may look fantastic (apparently), but I feel awful inside.

“But you went out yesterday”

Yeah, I was active yesterday, which is a big reason why I can’t be as productive today. I can be active, but I can’t be active consistently, and I’ll pay for it when I am.

“Praying for you”

This is the controversial one; please don’t let it be, these are my opinions. A lot of people believe in a higher power, and as I’ve mentioned in the past, I do not. Many people do not. When someone tells me they are praying for me, I try hard to think that, well, at least they are thinking of me. In reality, it makes me cringe. There is probably no other common thing that I hear that bugs me as much as this one. Again, I try to think of it as a good thing, but it’s hard. I’d rather they be more productive and share one of my articles. It’s not just about not believing though. Even if I did believe in a higher power, I wouldn’t want those prayers wasted on me because while my illness sucks, I’m dealing with it. There are far more people that need help out there more than me. So while I appreciate the sentiment, I’d rather you do whatever you believe to be helpful for someone who needs it more.

"You're an inspiration"

Maybe because I write about my illness, I don’t know, I get a lot of people calling me "inspirational" and similar type expressions. Again, I appreciate it, but I’m not an inspiration. Sure, I deal with a tough illness, but I don’t have any choice. I didn’t stand up and volunteer to get this disease. I think I deal with it well, but I also don’t always. I have breakdowns, I cry, I take it out on people, and I have terrible moments with this disease. Honestly, I’m probably not even really good at it, I’m simply more vocal about my experiences. When I do well, it’s because I have no choice and I guarantee you would do the same if you were in my shoes.

The “C” word

There is no cure yet. If there were, trust me, I’d know about it. Anything involving the word “cure” and I tune out immediately.

Venting about these phrases helps us deal with them, which is important. Remember, most people are well-meaning. They only want to help. So better to get past the angst of some of these tried and true phrases here than to take it out on them! Do any of these bug you? Any I missed that really grind your gears? If so, feel free to hit up the comments below!

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

Devin

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