Understanding Terms Associated with Multiple Sclerosis

Vicki Health Guide November 16, 2009
  • One young woman writing about her MS experiences said she did not want to call herself an MSer. She certainly did not want to use the word "disabled" in reference to herself. She had accepted the fact that she had MS, and that a natural progression of the disease leads to an introduction to life with a disability. She understood and accepted that reality, but her problem was actually saying those words.

    Language is powerful, and can be harmful or embarrassing. Certain words tend to denigrate people, or relegate them to a particularly unattractive or less capable group. I have a debilitating disease, and one little phrase can easily label me as "untouchable" and someone to be avoided. A word or phrase, even casually or innocently used to describe me, may suddenly drop my self image to a level difficult for me to handle. It doesn't happen with all words used to describe illnesses or conditions, but it seems to happen with MS and disability.


    I have been a writer most of my life, and words have always been important to me. I realize the dictionary definition of any particular word is not necessarily what it really means. Sometimes the meaning depends more on how it feels to a particular person in any situation. Words almost always carry emotions with them, and the meanings change with the emotion. Many people without MS, and that was once me, talk about it using emotions of pity or fear. When MSers talk among themselves, their emotions include frustrations, regret, anger, loss, fear, empowerment and peaceful acceptance. When these two groups are talking together, emotions are often mixed and communication suffers.

     

    The difference between the right word and the nearly right word
    is the difference between lightning and the lightning bug.
    ~
    Mark Twain


    When a person is diagnosed with MS, they don't walk into work the next day and announce
    "I'm an MSer." It is difficult enough to fit this debilitating disease into their lives. Why add the extra burden of the more frightening prospect that your entire identity might be misunderstood and possibly replaced. Instead of being a researcher, a software engineer, a teacher, wife, husband and parent, suddenly you are an MSer. It's just that now you have added this new label that carries a weight of its own.

    I say that I am an MSer, but it took me a long time to be comfortable with it. I'm also a mother, writer, grandmother, marketer in the travel and hospitality industry, a sculptor, a speechwriter. It all depends on the situation. I am still all of those things and more.
    "MSer" is the label I use when writing or discussing MS. It is easy to say, quick to write, and it gives me certain credentials of experience and understanding. Other people say "person with MS." These are just labels, but they are very powerful words.

    Other labels that come to mind:

    Spastic - When I was in elementary school, the word "spastic" was used by kids to insult other kids. Now I hear it more when people explain themselves in a particularly awkward or uncharacteristic situation, always accompanied with a chuckle and a bashful smile. Now that I am spastic, I would like to educate the public. A spasm is lacking grace and painful, but it is not cute and usually not funny.


  • Crippled - I was in group therapy when I was first diagnosed, and I described myself as a cripple. The group became angry that I would say such a terrible thing about myself. To them the word "cripple" was intensely negative. To me it was simply a statement of fact with no emotion attached.


    Suffering - Suffering is a word often used in the media and by people who do not live with this condition. This immediately invokes pity. Suffering for some people may be true, but it is not automatically a true description of the way we live with MS. Learning to live, coping, confronting, enduring — there are many verbs that better describe with a lower level of emotion.

    Disability - This is perhaps the biggest elephant in the room. I prefer to think of the abilities I have and can develop rather than those abilities I have lost or can no longer pursue. Disability has it's own vocabulary - many words that create visions of a broken person, a prejudiced media, and an uneducated public. I have written on this topic before (see notes).

    I'm sure there are more words and more stories. What words bother you? What seems to bother others when we talk about MS? Many people ask "What's wrong with you?" Be prepared with the answer that you are comfortable saying.

    Language is important and powerful. It involves how we feel about MS, and ultimately how we feel about ourselves. It is important that we can speak about our disease with each other, both those who have and have not been touched by MS.

    More than words is the power of language. It's the power resulting from emotion felt with the words. There may be no right terms, but there are definitely wrong ones. It will take time and education before everyone's words are acceptable. Until then, we have to keep our sensitivity in check. We can educate, influence and set an example.


    Notes and Links:
    Good Intentions and Worst Words 
    But Words Can Never Harm Me