Things Not to Say to MS Sufferers - My Top 10 List!
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Well you've discovered that someone you care about is diagnosed with Multiple Sclerosis and you want to help/encourage them. Here are some pet peeves many MSers wish you would not say. It will make your loved one's life easier if you learn to avoid the following . . . .
But you look so good . . . While well intentioned, such a comment actually invalidates the way the MSer could actually be feeling. Its true we enjoy a compliment, but if you are suffering a chronic ailment, and you feel terrible, being told you look good will not accomplish the purpose you intend.
Have you tried? . . . Usually a news report, study, or so-called remedy is then touted. Unless you are specifically asked for help in this way, it can become annoying, since most people with MS who are not in denial, do painstaking research on their own, and often are already associated with credible newsgroups and support groups/forums.
How long have you had Muscular Distrophy? . . . Its Multiple Sclerosis not Muscular Distrophy. A common mistake true, but when it comes from family or friends, it tends to sting a bit.
Why don't you just ignore the fatigue. . . The fatigue, if severe enough to alter one's day, cannot be ignored. It often leads to other "invisible symptoms" which just make the suffering worse. Encourage your family member or friend to rest and take care of themselves. Tell them you understand, even when you are disappointed that the fatigue has hit. They will love you for it, trust me.
You're so lazy since you got MS . . . Again, it is not laziness or a lack of desire, it is an inability to function which is totally out of the MSers control. It is a real slap in the face when you're told you are just lazy.
Are you sure you are not just depressed? . . . When doctors imply that a female patient just might be depressed or that the complaints are psychosomatic, it is time to find a new physician or specialist. It can take up to 10 years on average for MS to be diagnosed, during that time you are not imagining the complaints, your body is already being attacked, they just haven't figured it out yet.
This is the (fill in number) ___ time you've canceled on me . . . Believe me, your family member or friend knows better than you how many times he/she has had to break an engagement. Don't rub salt in the wound by reminding them. Just agree to reschedule and try again. The MSer wants to keep in contact with you, so try not to take it personally, even though it is difficult.
Call me if you need anything . . . You mean it of course, but in all probability, that is not going to happen. Instead you may have to take action all on your own. Dropping off something to eat, or read, or view can make a big difference to someone stuck in bed. Offering to pick something up from the store. Even cleaning the house can lift a heavy load off of the MSer's shoulders.
MS hasn't slowed you down a bit, good for you! . . . This one really worries me, because 99.99% have had to slow down and change their routines at least a little. If someone you love is in denial they will keep pushing and pushing until they keel over. You may have to patiently encourage them to think of their health and realize MS must be managed with common sense and humility. It might not serve their best interests to commend them for being exactly the same as before their diagnosis, they may believe they have to be perfect even though they are sick.
So that covers the 10 things I could think of. I am willing to alter the list of course, because quite frankly my memory isn't that great. Which reminds me of yet another often heard complaint
How could you forget that? . . . It is quite easy to forget things because MS causes lesions that involve short term memory. It is frustrating to have this problem ALL of the time, and if someone denigrates you, it of course just compounds things. I appreciate it when I can laugh about it with family and friends, not when I am made to feel defensive for something beyond my control.
Sounds like you're using MS as an excuse . . . No it is not a convenient excuse, MS symptoms are reasons that certain chores and activities can't be performed or accomplished and if we can accomplish something, why we are so exhausted afterward.
In conclusion, hopefully you can say you haven't said any of the top listed statements, in that case the MSer in your life surely appreciates you and values your support. But even if you have misspoke, don't forget you can easily rectify the problem by not repeating it.
MSer Hang'in With Friends
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Annie I tried to get a thyroid diagnosis, but MS kept coming up. At least with a thyroid condition medication can help. Your doctor should be supplying you with information on where you go from this point. Are you relieved to know that MS has been ruled out?
Hi, the Neuro said that it all is my thyroid, but he aint telling me much, for example, a Ana bloodtest + 1:160?
It went ok. He onlx did bloodtests for thyroid and 7 different kinda tests 4 muscle sicknesses. Will know the results the 7th December. Said that i do have a muscle sickness that can b caused by my thyroid and not that serious. But he aind 100% sure. All reflexes are gr8, just muscles that are a bit weak. Specialy neck. Thanx 4 asking
Annie, how did it go with your doctor?
Hi their, the worst ive heard is that ur faking the pain so that u dont have to do anything. Its real good faking to b faking the symptomes 4 bout 5 months without being diagnosed yet, and to b in constant pain and tired and even to forget that u were on ur way to the bathroom or on ur way to switch a light off. Id say its xtreme faking not to b able to smear bread as neatly as b4 and even struggle to carry n mug of coffee cause it gets to heavy. But hey, will hear the 23rd of November if i am faking.
Exactly! I can't even think about enjoying a visit if I look around and haven't had the energy to clean, not to mention the fact that it usually means I don't have the energy to think clearly, let alone talk. (smile)
The exact list could be applied to ME/CFS sufferers! Another few that bother me are when people tell me they're tired! When they bug me to come and see me, not understanding how hard it is for me to socialise, and when they say 'It doesn't matter to me how messy your home is'; they're missing the point, it matters to me!
You are a 5-year veteran of MS in my book daveydoka!
Seems to me you have done an incredible job of adjusting to and accepting what MS is and isn't. I couldn't agree with you more that MS is different for each person which means we can't be compared to anyone else. We all strive to learn what we can and apply it as it fits our circumstances. As a man with MS, there is no way your experience can be compared to a woman with MS. It would even be wrong if someone were to try to compare you to another man with MS.
Hopefully with some time your balanced views will be better appreciated and you will be commended for the great way you are handling all this.
Great to meet you!
I was diagnosed in 2006 and the worst thing I had to put up with at the start was my wife thinking that I was only Affected by my MS when experiencing symtoms. It took a good couple of years for me to get through to her that I am affected by MS every second of every day. Another thing that annoys me is that my wifes auntie has MS and she attends meetings and is constantly researching about how to deal with this disease etc. She thinks I'm in denial because I don't bother with anything like this. I actually changed my career and became a personal trainer as I found that regular exercise helps me to prevent severe symptoms or symptoms full stop. I see my neurologist once a year, I manage my sleep, make sure I don't take on too much ultimately to stop myself from getting stressed and I'm supposed to be in denial. Also from the research I have done I know that the effects of MS are different for everyone so I can't tell someone else that going for a run will stop symptoms. All I can do is tell others about my experience.
This is a great hub nice work
Hi jambandchick and Janet. You both explained your pet peeves very well. I wish there was something we could do to change the way others make us feel when we are already so vulnerable, but sadly there is nothing except to find those who do care and will appreciate your pain and fatigue. They are out there, just maybe not always where we would like to find them.
I take modialdal for narkolepsy, it helps the fatigue!
Also keeps the brain functioning, no cognitive problems!
The absoulute worst is when I say I'm tired my husband says he's more tired...when I rarely say I'm in pain even tho I'm nearly always in pain but have learned not to say so he's in more pain. In short it becomes a who is more tired, in pain, not feeling well etc. contest which I can never win so I have learned to say nothing.
A person who says he is in pain knows nothing about pain ...the person who is in pain and no one knows but that person is in real pain. I'm sick of people saying "there's nothing wrong with you, you look fine"
including the people who are the closest to me. I wish they would say congratulations on your strength and courage and positive attitude! I say to all derogatory remarks...walk in my shoes for 10 min. and you'll be so
happy to take them off!
I have a type of muscular dystrophy, and do you know I have had dr's continue to say MS when treating me...during the whole visit he would say MS and I would correct him and he would be like oh yeah and go on and say MS the next time.....ugh, my pet peeve too!....chronic fatigue is the worst, sometimes I feel like I sleep my life away now....I have to have 12-16 hrs, or I can't function!
Hi jtevans70, isn't it amazing what people say when they are trying to be "helpful"? Thanks for your comment!
I love it. I'm going to put a link to all my e-mails so that others can read this. Their's some that will think this is bad of me to say, but I was compared to a person with cancer. They said, "Well at least you don't have cancer like Susan." She has to have surgery to remove her breast?" My comment, "I wish I did have cancer so they could remove it." I love this essay. Thank you!
Thank you Rastamermaid! ;)
This hub is so on point, I laughed and cried reading it!
Thanks so much for sharing!
Hub up of course!
I think it is because MS has so many "invisible" symptoms. If we look alright we must be feeling alright, so some like to think.
Why do people think that your MS is not bad because you are not in a wheelchair? Or that you are doing so good with your MS because you are not in a wheelchair and they know someone who is worst off?
Wow Megan, one month is VERY new. I certainly can see how being told there is a cure is annoying to say the least. It would be great if the CCSVI thing proves beneficial but unless and until it is a proven treatment you are best to follow your neurologist's advice. It is a shame that the seriousness of your diagnosis is being down played with the "you will be cured" talk. Knowing people mean well does not always mean they are helping you in the true sense of the word. I'm glad you dropped by and I hope to see you around here more often. Being newly diagnosed is a confusing time, I hope you are handling it all as well as can be expected. Stay strong and educated and PATIENT! (smile)
I'm VERY recently diagnosed (1 month ago), and so far my "favorite" comments have been people telling me that they saw on the news that there is now a cure with this Dr. Zamboni dude. My neurologist told me on the day she diagnosed me NOT to listen to "the cure" just yet because it is unproven. But the media is making it out to be a cure and everyone is so excited. So most people I've told seem to think that I'll just be cured in a couple months. And EVERYONE thinks I haven't heard of it yet and EVERYONE thinks they are giving me the good news that I will be cured. It's all well meaning, but really rather annoying now.
Sue, you have listed one that falls under the fatigue umbrella. If we only got tired, it would be great. I think the only ones who understand are those who suffer chronic fatigue, even though it is not exactly the same, at least they have a glue about what being tired really means. I think I might just change my list to include your suggestion, I forgot how irritating it is to be told that. Thanks for weighing in.
how about when someone says "i know how you must feel i get tired too"....
you are most welcome......MFB III
MFB, your comment means the world to me. I especially like the ms stands for Making Silly Suggestions, lol I have to remember that one! Thanks for making me laugh.
Far too often people tend to dis ability and dis those who are confined beneath its burdens. In the guise of being helpful they spout all kinds of healthful remarks, that might work if Jesus still walked the earth and happened to note one's lack of health. There are no miracles yet for MS but I have known and loved several who have had it, and
learned much from their determination and inner strength at the worst times in the course of their disabilties. One would not approach a man with no legs and tell him that he is much lazier since he lost them, they should instead grab his wheelchair handles and offer to take him for a walk.
You have penned an excellent educational hub for those who think MS stands for momentary setback,. magical solutions or making silly suggestions. I wish you well but I know that is not a sure probabiltiy so I will you only the best that you can be under the circumstances.
~~MFB III
I'm happy to meet you Georzetta!
I'm glad you listed your favorite for consideration in this hub. Imagine equating being in a wheelchair with loss of speech or hearing. Thank you for posting this. Being disabled truly does bring us face-to-face with unexpected and at times nonsensical experiences.
I look forward to checking out your hubs. I'm glad you found me, so that I can now find you. (smile)
You left out my favorite. I don't have MS but I am in a wheelchair. I have some remote relatives who insist on speaking very slowly and very loudly at family gatherings. I'm 30 years disabled and they still think not being able to walk means not been able to hear or understand the English language.
It reminds me that even though we can be grouped under the label "person with a disability", we are all so very different.
Thanks Angela! Wow, I would hate it to if people told me that. I hope you don't hear that too often, MS is hard enough without such negativity coming from others.
Jen
What a great hub, everything is so true, the one that I hate the most is when people thing you will end up really bad and how much do you have left. It makes me wanna scream!
Hi James, what did your dad mean by not as bad as motor neuron? Was he saying your brain wouldn't be affected, or that your movement wouldn't be affected?
Try this one. I quote my dad after I was diagnosed: "Well it's not as bad as the 'ol motor neuron is it"
Annie 4 months ago
Yes i am relieved thanx. But i have to say that i dont realy feel any better after starting the meds, infact, just getting new pains. Mayb its just the medications way. I dont know. I am seeing a thyriod specialist end of January, so hopefully he can tell what the ana blood result mean. Do u understand the blood tests results or not? I do have them all with me.