Putting the boogeyman to bed: asking the hard questions.
Annie Scamman refuses to come to terms with her MS. She fears that to do so--and to do the planning that would follow--would be like inviting a boogeyman into her home. It doesn't matter that her symptoms have been increasing, or that her lack of planning has resulted in a few concussions from falling down the small flight of stairs in her Maine bungalow.
What matters to Scamman is her conviction that not planning is saving her stress and anxiety.
"Having MS is like living with a feeling of a ghost behind a door," said the 57-year-old, who was diagnosed at age 29. "I'm the anxious type and I didn't want to surround myself with lots of things that remind me that I could really get whomped by this thing. I really thought my best tactic was to resist."
But according to experts, Scamman's resistance isn't helping her. Leaving the big questions, "Can I keep my job?" "What if I go blind?" or "Who can help me?" unasked is prolonging her anxiety.
"Change is scary for everyone--whether they have MS or not," said Dr. Rosalind Kalb, a clinical psychologist and vice president of the Professional Resource Center at the National MS Society. But if you can deal with fear for a short time early on in your disease, you'll save yourself countless sleepless nights worrying about what could happen.
"None of us do our most creative problem-solving when we're in a crisis," Dr. Kalb said. "The earlier you can allow yourself to think about the unpredictability of the future, the sooner you'll put into place the kind of safety nets we all need."
The first thing to do is to allow your MS diagnosis to sink in, she suggested. Then you'll have the mental space to think about the implications of your symptoms and be able to start planning accordingly.
The next step is to set aside time on a good day to gently probe those big questions.
"Think about your finances and how you might do things a little differently, just to build up a bit of security," Dr. Kalb said. "If you do a certain kind of work, and that work might be vulnerable to changes in MS, think about how you could tweak it."
Next, take some small actions: Make an appointment to talk to a financial advisor. Explore job training that might allow you to continue using some of the skills you already have. An MS Navigator[R] at your chapter can point you to resources in your state.
Even if you're very anxious like Annie Scamman, you can still ask the big questions, said Dr. Marla Chalnick, a North Carolina therapist in private practice who has had MS for 27 years.
The trick is to work first on changing your perspective on the disease. As long as MS is a boogeyman out to get you, opening yourself up to thinking about hard questions will only allow the catastrophic thoughts already running through your head to deluge you. If you can change those awful thoughts, then planning won't be so scary.
"Thoughts like, 'I'm going to lose my job,' 'My husband is going to leave me,' 'I can't play tennis anymore'--these are all negative messages, not positive or creative," Dr. Chalnick said. "They aren't messages that allow me to figure out how to get things done today. They're messages about what I can't get done today."
Dr. Chalnick recommends thinking of your MS as a dependent child. After all, she explained, MS isn't a boogeyman. It shares your body. You can't leave home without it, even though you'd like to. You do lose some spontaneity by taking your MS into account, but you'll gain greater clarity and calm.
"I have to care for my MS in the same way I care for my animals," she said. "Before I leave the house, I know I have to prepare for them. MS is the same. It's a dependent--it's a very independent dependent, but it's still something I'm responsible for."
Scamman has been working on her perspective and while she is no more fond of her MS now than she was before, she thinks she'd do things differently today. She'd try to plan a little better.
"If you've just been diagnosed and you're making big life decisions like buying a house, don't do what I did," she said. "I should have bought a house on one floor. I should have taken the MS into account."
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Get the Facts
Before you can deal with life changes, you have to know your options. And how you decipher those options largely depends on how you learn, said Dr. Rosalind Kalb, a clinical psychologist and vice president of the Professional Resource Center at the National MS Society.
How much information do you need?
Do you like to become an expert? Some people want an encyclopedic knowledge of challenges they might face. For others, that much information would leave them stuck in their tracks. Which are you?
What medium works best for you?
"Some people like books that they can mark up," Dr. Kalb said. "Others are more comfortable with a five-minute podcast. Others want to go to a public meeting. Still others want to post questions on an Internet bulletin board. What works for you?"
What information should you trust?
Not all facts are created equal. Find out if the information being provided is part of a moneymaking enterprise or if the facts are designed to get you to take a position on a controversy. It's not that such sources can't be useful, but you have to temper your expectations with the reality that they are pushing an agenda.
Non-biased Web sites like the National MS Society (nationalMSsociety.org) or the MS Coalition (multiplesclerosiscoalition.org) are good bets. Books from Demos Medical Publishing (demosmedpub.com) have a long record of reliability. MS World (msworld .org), which offers chat groups and bulletin boards, is a partner of the Society.
Are the facts out of date?
"Things are changing so fast these days that even a book two or three years old could be obsolete," Dr. Kalb said. Check the publication date. Check dates on Web sites, too. Find the most current MS information you can.--HB
Heather Boerner is a San Francisco-based health writer.
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|Title Annotation:||Plan for Your Best Life|
|Article Type:||Cover story|
|Date:||Dec 22, 2008|
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