Talking About Your MS: Communicating Your Needs - dummies

Talking About Your MS: Communicating Your Needs

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Even though you may feel like it some days, your multiple sclerosis (MS) isn’t written all over your face. Particularly if you’re dealing with any of the disease’s less visible symptoms, such as fatigue, weakness, bladder problems, or cognitive changes, other people may not have a clue what’s going on with you or what you may need — or not need — from them.

Remember: No one can read your mind. It’s up to you to let people know when, and if, you need something from them and how they can be of most help. And by the way, don’t assume you can read their minds either: The fact that people don’t jump to offer assistance doesn’t mean that they don’t care. Two-way communication is the key.

Talking about MS: Give clear messages

You may have mixed feelings about getting assistance from others. On the one hand, you want to do all the things you used to do, just the way you used to do them. On the other hand, some days are better than others and some tasks are harder than they used to be.

When it’s a good day, you want to do everything yourself and you want others to know that you can. When it’s a bad day, though, you wish someone would step up to the plate and help. The problem, of course, is that people aren’t likely to know what kind of day you’re having unless you tell them.

The best strategy for communicating your needs is to ask for help when you need it and to thank people and politely decline when you don’t. However, when you do need help, always be sure to let people know exactly what kind of assistance would be most useful to you.

Talking about MS: You can’t have your cake and eat it too

Sandra’s husband, Jim, was in a no-win situation. He wanted to be helpful to his wife but could never seem to figure out how and when to help. Sandra had always been a fiercely independent person who liked to do things in her own way. When she was diagnosed with MS, Sandra made a point of saying that she wanted to remain as independent as possible.

So, to respect her wishes, Jim waited to be asked before he stepped in to help. But he quickly figured out that Sandra was pretty ticked off at him for not helping out more. When he finally asked what the problem was, she told him, “If you really loved me, you’d know when I feel crummy and need help.”

Poor Jim. The truth is that even people who love you won’t necessarily know how you feel unless you tell them. In fact, the people who love you the most may be so concerned about hurting your feelings or doing the wrong thing that they find it hard to do anything at all. Too much guesswork is an emotional minefield.

So, the solution is to have a “heart-to-heart” talk about how you’re going to let the other person know what you need and when — whether it’s assistance of some kind, a pat on the back on a really good day, or just a hug.

Talking about MS: Stake out your independence

Everyone gives help in a slightly different way: Some people do it by telling you what to do; others by offering to do things for you (or simply doing them without asking); and some by asking whether you want help with anything.

The last group is the easiest to deal with because they’re relying on you to tell them if and when you need their assistance. The first two groups are more challenging because they assume that they already know what you need!

Your best strategy when dealing with those people who think that they know best is to thank them for their care and concern and promise them that you’ll let them know when you need assistance. The important message to get across to them is that doing things for yourself — even if it takes a bit longer than it used to — is a source of pride and satisfaction that you don’t want to give up.

If you’re experiencing problems with walking or balance, you may find that some people — particularly those who love you the most — begin to hover protectively. If you find people looking like they’re ready to catch you at any moment (or standing as far away as possible so they won’t get crushed), that’s a pretty good sign that you appear unsteady and at risk.