They said what?!
How to handle off-the-wall remarks about your MS
While some people in your life may know what to say when you tell them you have relapsing MS, others may not know how to respond—or worse, may say something off-the-wall, or even hurtful.
Though it may not be possible to prevent these types of comments, it may be possible to change the way that you react to them (in other words, not with anger, stunned silence or laughter). When faced with an uninformed or seemingly insensitive remark, consider the following tips.
You may be an expert on MS by now, but most people aren't. In fact, MS can be confusing for people who aren't familiar with it. If friends or co-workers say something insensitive to you, chances are that they aren't trying to hurt your feelings—most likely just the opposite. Rather, they simply may not know much about the disease. Remind yourself that their comments are coming from a place of care and concern—so give them the benefit of the doubt when responding.
Patience goes hand-in-hand with understanding. If someone asks you a seemingly ridiculous or insensitive question—such as, are you going to sell your house?—it may help to take a deep breath and patiently explain that there are many unknowns in life, and for now, you have no reason to move. Ask your friend or co-worker if he or she has any questions, and take the time to explain the disease and its symptoms in a way that can be easily understood.
Do your best to really describe your MS symptoms—why you might be experiencing them and how they're different. Say, for example, someone says to you, "I'm so tired. I totally know how you feel." Instead of biting the person's head off (which may be tempting), use this as an opportunity to explain how MS fatigue is unlike ordinary every-day tiredness (e.g., it doesn't matter how much sleep you get, it just happens; or it feels like a day spent walking through three feet of sand).
When used at the right time, humor can usually help. While you don't want to make light of your MS or insult someone, a dash of humor can help diffuse a potentially awkward situation. Says MS LifeLines Ambassador Carolyn, "I find that by laughing, I'm comforting my family and friends and helping them deal with my MS. Because the more I laugh, the more they laugh back. And by helping them deal with my MS, I'm helping myself."
If an off-the-wall remark is based on lack of knowledge, politely offer resources for more information. Recommend a website or book that can explain the disease and shed some light on what you're going through. Learning more about MS can be both educational and reassuring for others.
Unfortunately, there may be times when no matter how much explaining you do, someone simply doesn't get it. In these instances, it helps to know when to let a comment or two go. Take a mental trip to your happy place.
Being open and honest about your MS and your symptoms may help educate those around you (thus limiting the number of uninformed comments you receive). If, however, someone says something to you that you can't let go, don't be afraid to be honest about how the remark made you feel. Keeping the lines of communication open with loved ones and friends will better serve you in the long-run.
Dos and don'ts: tips for family members, friends and co-workers
Because most people may not know just what to say when you tell them you have relapsing MS, it may help to educate them. Below is a handy list of dos and don'ts for the many people in your life. Feel free to add your own suggestions before passing this list along.
Don't make assumptions
MS is not a one-size-fits-all disease. Symptoms are different for everyone. Don't assume you know what your loved one with MS is going through, because chances are, you don't.
Do ask questions
The best way to find out what your friend or family member with MS is feeling or experiencing? Ask. This will enable a better understanding of the disease and open the door to ongoing conversations about it. It will also allow you to be a better source of support.
Don't be negative
"My great aunt had MS. She died." Even if your words are meant to be helpful or informative, consider how they might be interpreted. An MS diagnosis can be scary; don't make a situation worse with overly negative comments. Be sure to think before you speak.
Do be supportive
More than anything else, your loved one with MS will need your support. Be there in whatever way you can, in whatever way you're needed.
Don't offer uninformed or unsolicited advice
Living with MS and following a treatment plan can be overwhelming. Don't add to this stress with suggestions for remedies, vitamins or miracle cures.
Do offer assistance
Instead of offering unsolicited advice, offer unsolicited help, love and support.
Educating others about relapsing MS
Below are some steps for educating friends, family and co-workers about relapsing MS.
1. Explain what MS is. Provide a basic explanation of the disease, what it is and the general symptoms of MS. The level of detail you'll use will depend on the people you're talking to. Always ask if there are questions you can answer.
2. Explain how MS affects you personally. Because MS symptoms can be different for everyone, it's important to explain what the disease looks like on you. What are your symptoms? How do they manifest themselves? What should people expect?
3. Suggest resources for more information. Recommend your favorite websites (such as www.nationalmssociety.org or www.mscando.org), brochures or books about MS that can further explain the disease and shed some light on what you're experiencing.