My List of 11 Comments Not to Make to People Who Have MS
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.