Husbands and Wives Living With Multiple Sclerosis

Nancy Fleming Courts; Amanda N. Newton; Linda J. McNeal

Disclosures

J Neurosci Nurs. 2005;37(1):20-27. 

In This Article

Barriers

The invisible symptoms of their spouses often caused problems, and sometimes it seemed that these were problems they should not have encountered. The fourth theme, therefore, was barriers—both human and environmental. Barriers were discussed more by the men. Only one woman complained of lack of wheelchair accessibility.

Human barriers came from other people who showed a lack of understanding of MS. One husband reported, "[We need] public awareness . . . ." Human barriers also were encountered in the healthcare arena: "It is hard to get through [office personnel] to [the physicians];" "When you call [the physicians' office] you don't get a human being. You leave a message;" "It takes us 2 to 3 weeks to get an appointment;" "Sometimes [the nurses/receptionists] seem to think they are there to make diagnostic decisions." These issues caused a great deal of stress for spouses. That some symptoms of MS are invisible led to remarks such as, "When [friends] see her out they say, 'Well, you don't look like you're sick,'" expressed in tones of anger and disgust.

The men expressed anger at the difficulties they had when parking in the spaces reserved for people with disabilities because of the snide remarks made by strangers who thought they looked healthy. "When . . . [they don't] see any physical ailments when you are getting out of your vehicle, they can be extremely rude. That's the biggest problem we have."

One man described an especially unpleasant episode involving his wife. He said, "She was falling and had bruises." Her coworkers "thought I was beating the crap out of her. . . [and] had a police officer there" who arrested him. His hurt, anger, embarrassment, and resentment were obvious. He complained that no one investigated or asked either him or his wife about the bruises. It was incredibly upsetting to be suspected of physically abusing his wife.

The men complained about the accessibility of aisles in department stores to their wheelchair-bound wives. "The ADA [Americans with Disabilities Act] rules read clearly either 36 to 48 [inches] on aisle ways. . . and it's certainly not anywhere near that." Another explained how he dealt with his problem: "My wife's coming through on her scooter [and I] . . . just move the display. I mean it's terrible what they are doing and what they are getting away with." The spouses could identify areas that were and were not handicap-accessible, discussed ADA rules, and mentioned ways to enforce the rules. They believed that "the public doesn't understand what we are having to go through."

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