How does a person deal with the diagnosis of a progressive illness? I have interviewed two persons who have been diagnosed with Multiple Sclerosis, and found that they had very different ways of coping when they found out they had M.S.
With their permission, let me share their stories:
Carrie, who was 37 at the time of our interview, was diagnosed with M.S. five years previously. She began noticing visual problems such as loss of centerpoint vision and numbness in her hands, but it was two years before she was diagnosed with certainty. During that time, she suspected that she might have a brain tumor. Since she knew very little about M.S., Carrie was more frightened of the possibility of having M.S. than of the possibility of having a brain tumor. Her fear of this unknown disease caused her to refuse to consider the possibility that she might have M.S. It wasn’t until two years later when she had a flare-up of numbness and visited the doctor that she finally broached the subject of M.S with the doctor, and the doctor told her straightforwardly that she definitely had M.S. Her husband’s practical and calm attitude of acceptance has helped her accept and cope with the diagnosis and the condition, she said.
Carrie said her initial reaction was “Why me?” She said that she turned to God at this time to ask questions and get comfort. Her husband’s hopeful outlook has aided her adjustment as well, she said.
At first, Carrie was ashamed to tell others about her disability, because she disliked the pity she received when she did tell others. She disliked “being fussed over,” she said. Today, if someone asks, Carrie tells them about having M.S. in a matter-of-fact manner, and answers their questions briefly. “The best way to help the public accept and understand M.S. is for M.S. patients to show them that we can cope with this disability, not to be afraid,” she said.
Carrie worked full-time at this time, so she tried to limit her scheduled activities so she wouldn’t become overly fatigued. She says that she has learned to rest as a way of coping. Carrie said that she “programs herself” to have a good day each morning as part of her “waking up process.” She believes that this “positive thinking” helps her to cope with any frustration she may meet.
Though she is ambulatory, Carrie has patches of numbness in one leg and complete numbness in the other leg. She takes medication and she resists the idea that she may someday need to use a wheelchair, instead of a cane. She said that she does not see having M.S. as a great disadvantage or misfortune.
Dan, 43 years old, was diagnosed nine years ago, after he collapsed in an airport and was hospitalized. Doctors told him during his stay at the hospital that he had M.S. He said that he lived in denial for years after that. His family, a wife and several children, were “concerned, bewildered and over- protective” about the diagnosis, but they never really communicated about how they would deal with daily life after the diagnosis.
Dan worked for seven years after his diagnosis, eventually using a cane for mobility. Dan said that he had to deny his disability at work, having to fake a cheerful “go-getter” attitude in front of clients and co-workers. He said that his bosses knew that he had a progressive disease so he had no possibility of job advancement. When questioned about his cane, he usually told people that he had had a “skiing accident” which was a “prestigious” disability in his opinion.
Dan’s “faking” eventually led to many frustrations at home and to his eventual divorce, he believed. Neither he nor his family knew how to deal with his emotions and the problems at home. “When I got off the plane Friday and went home, I stopped faking and became myself, letting out all my anger and frustration out on my family,” he said. “Then on Sunday night, I got back on the plane and put on a smile, and tried to fake it through another week at work.”
Today, Dan says that he doesn’t fake it as much. He hasn’t worked in the last two years, and receives Social Security disability payments and a company pension. He uses a walker instead of a cane because he experiences double vision, weakness in his legs, and poor dexterity. He has received counseling, and has finalized his divorce. For two weeks after he quit working, Dan would go to the airport every day as he had done while traveling for work. “I just wanted to feel that I was part of that world still,” he explained. He has not found any satisfying temporary jobs, and has no hobbies, he says.
Dan said that he has always felt that he must “fight” his disability, or he will “go down” because it is “easy to give up when you have a disability.” He finds stress and fatigue the biggest problems for him and said that he has had to learn to realign his priorities and compromise his desire for efficiency in doing things. He expressed anger that his doctors did not recommend counseling immediately after his diagnosis. He said that he has found that few psychologists and psychiatrists really understand the effects of disability. “M.S. is mainly a psychological disability,” he said, “it’s how you cope with it in your head that makes a difference,” he said.
While there may be no “right way” or “wrong way” to cope with a diagnosis of M.S. or any other progressive disease, I think that that these anecdotes show the advantages of acceptance, open communication, and practical support from family and co-workers in aiding the patient to find positive ways to cope. Whether you are a family member, a healthcare professional, or a friend of someone with a disabling condition, how you handle that diagnosis, how you communicate your support and caring makes a big difference and sets the tone for days to come. That’s what caregiving is about.
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