Many people living with Multiple Sclerosis spend an inordinate amount of time fielding unsolicited comments and advice about health, lifestyle, and treatment choices.
Assumptions are made based on how people think you look on the outside. If you do not have visually obvious symptoms, you may find yourself the object of cavalier comments insinuating that your case of MS isn’t “bad enough” to merit concern or complaint because:
“Some people have it worse than you.”
“We‘re all tired, you just need some more sleep.”
“Everyone has pain, I’m in pain too.”
“We all fall! I’m a klutz too.”
“Everyone forgets stuff.”
“If you ate better and/or exercised more, you’d feel better.”
“Me too! Me too!”
“How bad can it be, you look okay.”
“Be happy its just MS and not something worse.”
Living with a potentially progressive chronic illness with fluctuating, confusing symptoms is frustrating enough without having to deal with ignorant and snide comments. This behavior lacks empathy and compassion and is just hurtful. Why do people feel it’s within their right to diagnose you, give opinions on your health, and ask rude questions?
“Is MS contagious?” Seriously? It’s an autoimmune disease, not the plague.
“Can you die from that?” This is just mean. Would you ask someone with cancer or another chronic, progressive disease if they were going to die? Of course not!
Even within the MS community, there can sometimes be a dismissive attitude toward certain symptoms and treatment and lifestyle choices. Some people think their way of treatment is the only way and they don’t respect other people’s right to choose their own wellness path.
Sometimes people comparing symptoms can start to feel like a contest to see who is worse off with some people trying to one-up others on the severity of symptoms, while others are apologizing for bringing up their question or symptoms because, “They know they’ve been lucky, but…”
Well, I don’t feel lucky. Just because my symptoms don’t show on the outside does not mean they don’t impact my life. It does not mean MS has not disrupted and transformed my life into something different than I imagined for it. Why do people living with invisible symptoms need to justify their symptoms to be believed?
No patient should ever have to experience the feeling of getting the brush-off from their doctor. Yet, talk to people with MS and you hear this over and over. If a doctor doesn’t observe a symptom happening in front of them, they don’t believe it. MS doesn’t work like that. It’s different every single day. MS doctors know we get invisible symptoms and they know it’s a progressive disease so why all the doubt? Doctors need to acknowledge that just because we might seem okay during our twice a year, 15-minute appointment does not mean we are okay. That brief time does not reflect our day-to-day struggles. Passing a walking test does not mean we don’t have trouble walking. Just because our bruises and cuts have healed since the last face-plant does not mean there is not a problem with balance and falling. Does it only count if you end up in the ER?
I think its human nature to compare. Most of us are honestly commiserating with one another as it can be helpful to hear that others have similar issues and to know that we’re not alone in our struggles. Sharing our experiences and insight can help us learn better ways to manage our symptoms and to live healthier more fulfilled lives.
Maybe if there was more guidance from professionals on how to live with chronic illness we wouldn’t have to regularly interrogate each other on what to do, what to eat, what to take, how to deal with symptoms, and what to do during a flare-up. MS is not a new disease, there should be a clear cut protocol for these subjects. There should be wellness workshops to teach us the importance of acceptance, nutrition, exercise, stress management, managing mental health, and their potential effect on the course of disease progression and quality of life.
Living with MS can be challenging enough without having to deal with insensitive comments. On the other hand, I am grateful for anyone who is genuinely taking the time to ask questions about MS and its impact on my life. At least they are trying to find common ground.
As far as dealing with random people with no manners, I’ve learned:
Some people will never understand that just because you look okay, doesn’t mean you are okay.
Some people will always compare. Don’t let them make you doubt yourself.
Not everyone will understand you or agree with you and that’s okay.
Supportive people don’t try to tell you what to do or try and fix you.
Some people never learned the golden rule- “If you have nothing nice to say, say nothing at all.”
Thank you. you hit it right on the head. … sometimes we fall .. I had a big one today! wow 6 inches is a long way .. So many things that you have mentioned I have experienced as well. I’ve been diagnosed more than 40 years, but I insist on “I have to keep on trying”” Thank you for all of this, … I hope it will open peoples eyes and opinions somewhat! The older you get, some things are difficult and disgusting … but I have to keep on pushing, and showing by best, as difficult as that may be! THANK YOU.
Very good article. Thank you.
Oh, these are the words I have, surrounded by tears, inside myself.
Neurologists, who are supposed to be the ultimate (?) knowledge of MS have been the very source of so many upsetting consultations. I feel they think I am lying……
I don’t want to be ill, I want to be able to do all the things I used to do, I want to not be a drain on my husband etc. etc. I want to continue to lead my life in a positive way – symptoms that do not show are cruel, especially when I so want to lead my life without having to look and live with people who have no understanding at all of what it is like, I do understand that if these people do not have the problem themselves it can be difficult.
Thanks so much for writing the article. Good to know that there is understanding somewhere.