After having multiple sclerosis for six years, I’ve decided there are five things “healthy” people might not understand about the disease, and it really drives me crazy.
So, I’ve compiled some common misconceptions and advice to help spread awareness among those who aren’t familiar with MS.
1. Remember, it is a fluctuating condition.
Last July, I ran a total of 51.5 miles! Does this mean I’m cured? Nope! Does it mean I’m faking my condition? Gosh, no, it was excruciating doing that much running. But I had to prove it to myself and show others it could be done if I put my mind to it.
But if I announce on social media my achievement of running 6 miles, it doesn’t mean I can go out for dinner with you that evening or drive you somewhere after I’ve been running. It also doesn’t necessarily mean I can do things with you the next day. Please don’t get annoyed at me for this; I’m just trying to live the best I can.
I love this column from the “MSunderstood Millennial,” Stephanie Towler, who interviewed her parents to see how much they knew about MS.
2. Please understand that I must make allowances.
If I choose to go out with you one night, please understand that I must take that day off to save energy. I also must take the next day off to recover.
If I turn you down and say I don’t have time to go out with you, it’s because one night for you actually means two days for me, and I have stuff to do, too.
3. Be mindful of what you say to me.
As someone with a chronic health condition, please note that I may find some things you say frustrating.
For example, if you ask how I am, and when I respond, you say, “I’m tired, too,” I might feel annoyed. Your level of fatigue is much different than mine. People with chronic illnesses want to feel understood, even if you don’t understand entirely. Try to answer with, “I can’t begin to imagine how fatigued you are. I hope you feel better soon.”
4. Don’t assume without asking that I can’t do things.
This one drives me crazy. Sometimes people assume things about me without even asking.
They may take the illness at face value and say things such as, “Oh no, don’t worry about moving that chair. I’ll find someone else to help me.” And I may feel perfectly well at the time. Or, “I didn’t ask you to come shopping with us for party outfits because you’d be too tired.”
Just because I struggled to have the energy to walk around a shopping mall once or had weak arms doesn’t mean I can never go shopping or lift a plastic chair. Please see point No. 1: My condition fluctuates.
I need to be in charge of what I can and can’t do. If I feel I can’t do something, I will let you know. People with chronic illnesses can have good days, too, so just ask.
I recently planned my best friend’s hen party (bachelorette party). That meant coordinating a weekend of activities for 10 other ladies I’d never met. Somehow, I pulled it off. You can read about that experience here.
5. Avoid the dreaded ‘miracle cure’ recommendation.
One thing that drives people with chronic illnesses nuts is when “healthy” people suggest “miracle cures.” Such as: “I know so-and-so had MS, and they took a bath in rose petals with special essential oils imported from Mexico and their MS cleared up and went away!” Or, “This person I know started eating avocados every day and took this supplement, and now they don’t have MS!”
“Wow, good for them!” I reply.
What are we supposed to say in these situations? Do people really believe that if there were a cure, we wouldn’t know?
I hope you have enjoyed these five things that can be irritating to hear. A little more awareness goes a long way.
What have people said to you that you’ve found annoying? Please share in the comments below.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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