Helping Friends and Family Understand Multiple Sclerosis Having a chronic illness is hard enough to deal with on a daily basis, but when you feel the people around you dont understand what you are going through, a sense of loneliness and isolation can set in. Most of our loved ones have good intentions and they want us to feel better. The problem is they often do not realize exactly how MS affects the body. Having MS is not like having the flu or being out of shape, although the symptoms may sometimes mimic those conditions. So when you say you are exhausted or too weak to do an activity, the natural impulse is to believe that rest will solve the problem for good or exercise will get you into shape. Ironically, there is some foundation to those suggestions, which confuses the issue even more. So it is important to explain to the people around us precisely how MS is affecting us and which interventions are truly effective. A good place to start is with a self-inventory. Honestly identify for yourself what your biggest issues are and what your most effective coping strategies are. Many of us are so focused on being strong that we do ourselves a disservice by sustaining unrealistic expectations. We cannot help those around us to be sensitive to our needs if we arent taking care of ourselves. Note for yourself what your limits are, when you need to rest, what activities make you feel better and which are simply impossible anymore. It is helpful to provide your friends and family with as much information about MS as possible. But because everyones experience is different, you must be clear on how it impacts you. When you have to say no to an activity or need to take frequent breaks, explain as specifically as you can what you feel and what you need. I would love to go to the movies on Friday. But I have an appointment that afternoon and I know that will take everything out of me. The way MS affects me, I know I can only do one activity a day. Can we go on Saturday instead? Or A walk after dinner sounds great. But my legs are too weak to go much farther than the driveway. I know it the use-it-or-lose-it concept makes sense for most people, but with MS more walking doesnt make me stronger, it only wears me out. Talk about common perceptions and beliefs. The media is fond of feel-good stories about people with disabilities beating the odds, which is very nice when it happens. But most of us with MS cannot climb Mt. Everest. Most of us cannot take part in cross country biking. Many of us still work, but just as many no longer can. Explain the different levels of symptoms that people experience. Emphasize that youre not being lazy when you dont push yourself to do some of these activities, but rather you recognize your limits and know you have to conserve the energy you do have for things like taking a shower or getting dressed. Often, bringing it down to basic details like that really illustrates your reality with the disease and the toll it takes. People who care about us have a myriad of emotions regarding our illness, often similar to our own feelings. They want the old us back. They feel terrible about what we are going through and want to make it better. They think if they encourage us enough we can overcome these pesky symptoms. The best approach is consistent honesty. The more they know, the better they will appreciate your needs. Candid discussion and forthright information will support authentic and rewarding relationships.
Posted on: Sat, 08 Mar 2014 04:55:23 +0000
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