1st Dec, 2002
Real Living with Multiple Sclerosis
I RECENTLY READ an interview with Michael J. Fox in which he explained how he dealt with "being sick with Parkinson's disease." Somehow, I thought a high-profile advocate would have the attitude that the disease is not a sickness.
My anger at his remark served as a catalyst for action. I decided to use my joke E-zine to E-mail my thousands of subscribers and ask them whether they think a person with a disease is "sick."
My opinion? Sometimes MS gets in the way of life. But it's not an illness. It isn't the flu. MS is a chronic health problem, a disease that changes a person's baseline of "normal." You have to learn to live your life to the fullest with whatever energy you have. You have to pace yourself sometimes. You can't overdo it when you feel good.
Somewhere along the way, I started hearing the word "sick" with regard to MS, as in "She can't do that-she's sick." The label "sick" was applied to me, as well as to all individuals with MS. Even people who have MS sometimes refer to themselves as sick. This shocked me.
Living with MS means changing our expectations. I can no longer garden; that doesn't mean I'm sick. I can't travel as I used to; that doesn't mean I'm sick. Some days, the only physical challenge I take on is bringing in the mail. But, sick? No.
Opinions Poured In
To write this article, I solicited input from the hundreds of people who contribute to and read my E-zine (Scream of the Crop Jokes and Quotes). The first thing I asked: What is the first term you think of when you hear the word MS. About half the Scream readers equated MS with illness. The remaining half offered a variety of words, including disability, disorder, incapacity, challenge, pain, debilitation, limitation, and muscle weakness.
Obviously, this isn't grant-supported research. I simply wanted to know if these regular folks think people with MS are sick. With too many variables to make profound comparisons, I could see that the respondents were divided into two general camps, based on their situations.
I noticed that those in nursing homes and those closest to someone with a disease thought individuals with MS aren't sick. Those who have some disease often felt they weren't sick, but have a treatable disease. Those who were less familiar with disease felt disease equals sickness.
Some of these people know a little bit about me because of my E-zine. But, to most users, I'm only the person who sends the Scream. Many respondents weren't sure what MS is-much like those of us who were ignorant about it until we were compelled to learn. Here are some representative comments from the Scream of the Crop members.
"I think of MS as a disease, not an illness. I don't think of someone with MS as being sick, more like challenged. There's a lot to overcome and it does get progressively worse."
"Maybe I don't think of disease the same way as the rest of the world because I work in a hospital. I don't think of people with MS as sick any more than I think of someone in a wheelchair as sick. It's a condition like diabetes or hypothyroidism, something people treat to the best of current medical knowledge and then work around the limitations imposed on them."
"I've never thought of people with MS or polio or cancer as sick! When I think of sick, I think of colds, flu, sinusitis or any one of the thousands of illnesses people have that are temporary in nature. People with MS have a lifelong, chronic disease that they must learn to live with. My hat is off to those who learn to adjust their lives to live with something that they've no control over (yet)."
"I have attention deficit hyperactive disorder, and I'm not sick either. It's just who I am."
When someone is diagnosed with a disorder resulting in disability, I say that the concept of "normal" changes for that person. Sickness, to me, says that you are unable to function normally. When you're diagnosed with MS, you need to recognize that having new challenges isn't the same as being abnormal. You just need to alter your perception of normal.
Consider my opening question on your own. The answer I realized is: We are what we feel and believe. Our outlook determines whether we are sick or not (until a cure makes this a moot point).
To see Shara's Web site, go to http://www.rendell-smock.com.
© 2002, Real Living with Multiple Sclerosis