I heartily agree with what Christopher Jacoby has to say in this post. Take a look, read my comments after the post, and let me know what you think by leaving a “comment” of your own:
The first step in being prepared to deal with people reactions of your Multiple Sclerosis is by understanding your own condition. If you want people to understand your health problem, you’re the one that should educate them.
Introducing them to Multiple Sclerosis
Others knowledge on Multiple Sclerosis may be absolutely nil. So, you must be ready to tell them what MS is, and how it affects your life.
You can start by easily describe your condition. Consequently, first, you need to educate yourself by reading books and online resources so you can correct misinformation or at least answer common questions.
You can visit National Multiple Sclerosis Society’s site to find virtually every aspect of Multiple Sclerosis. Among the most important thing you should share with others is that this condition is unpredictable and can have unique effects in each people. So, after showing them basic facts on MS, you need to tell them about your own Multiple Sclerosis case.
• Among the most common misconceptions is to confuse muscular dystrophy with Multiple Sclerosis. Muscular dystrophy is a children neuromuscular disease. Remind others that MS is essentially an autoimmune disorder that affects your central nervous system.
• Explain that Multiple Sclerosis can affects people in unique ways. Tell them a few people become seriously disabled, many others don’t. Stress that your Multiple Sclerosis is not contagious.
• Reassure those who become distressed with your condition. Tell them that a number of effective treatments are available for Multiple Sclerosis patients and that you are doing everything necessary in taking care of yourself. You can also tell them that being sad is alright, but it is more important to focus in making it easier for yourself. This is especially helpful when you can’t cheer others up about your condition.
• Depending on whether you want to share everything, you can explain how MS can affect you. It is an excellent opportunity to describe how variable symptoms may appear from morning to evening. You should inform them about symptoms that others can’t readily see, for example severe fatigue, tingling or numbness, pain, or problems with memory or attention. If they want to find out more about your current symptoms, give them a National MS Society booklet.
• When you’re trying to respond to those well-meaning advices about what treatments to take, foods to eat and cures to try, it is a good idea to tell them that you and the neurologist already have the best management strategies.
How to deal with common reactions?
Although you can’t predict accurately how people will react to your MS diagnosis, it is still possible to encounter a few fairly common responses from family, colleagues, and friends. Here are a couple of advices on giving the proper responses:
How are you?
Even if you’re perfectly healthy, you’ll find many people greet you this way. However, when they already know about your condition, it doesn’t seem like a common question any more. You may be wondering whether they are asking your condition, these are some clues.
Most people don’t really refer to your condition – they’re just making small talk and trying to be polite. So, don’t waste your energy explaining your condition even if it only takes a couple of minute. If you quickly launch into an elaborated account on the progress of your current Multiple Sclerosis condition, they can be genuinely startled. So, for people who are just making a simple polite chat, “I’m fine” should do the trick. For those who are close to you, you may need to do some explaining: If you’re in the mood and there’s time, you can fill them in. If you’re busy thinking about other things or doing something and you think it’s a bad idea to talk about your Multiple Sclerosis at this moment, just saying “Pretty much the same” often works, too.
But what if they gaze at you mournfully while saying “How are you, dear?” as though you’re standing at death’s door? Of course, you need to see whether they really care about you or they just glad hearing about others’ troubles.
But you look so healthy!
Just when you are hoping that those who are close to you get what you’re previously saying about your Multiple Sclerosis, you may hear this type of response from family members, classmates, and friends: “But you look so healthy!” Determining how to react to this double-edged sword may be a little challenging. On the one hand, you should be grateful that others think you look fine. However, this is a tricky comment to respond to when you’re feeling a bit crummy – tingly, numb and exhausted, or as weak as a soaked string. Interpreting the implicit message can be even tougher. Is he trying to encourage and reassure you? Or are there any hidden messages to dig up?
Your best tactic is probably by sorting out the implicit message before preparing a response. If he is just an acquaintance or doesn’t close to your family, you can say “Of course, I’m fine” and move on. But if he is a close relative (a cousin or others), try to tell him that there is more to Multiple Sclerosis than meets the eye. You may need to act like politician, by deciding how much information you need to share, and be ready to explain less susceptible Multiple Sclerosis symptoms.
[By: Christopher Jacoby for healthguidance.org]
Haha I get that last one a lot. I’ve mentioned before that I’m pretty much physically asymptomatic, so I get “You look so good!” or similar comments a lot. I know they’re trying to be helpful and supportive, but it’s really frustrating when I feel like I’ve been run over by a truck and I’m still standing there, trying to smile and say “thank you.” Maybe I’ll make a list of things to say when I feel like I need to “act like a politician” – it’s called pre-scripting, isn’t it? And I’ve totally stopped asking people “How are you?” unless I feel like I have time to really listen to the answer, or respond appropriately when they return the question.
What about you? How do you deal with people who are wondering what’s happened to you? Do you have a standard “How are you?” response?