Television Tips: Raising Awareness

By Alisa Vanderzalm

Originally published in Youth Allied By CFIDS, Winter 1997

When I was six, I wistfully dreamed of being on television, you know, the Hollywood stuff. Little did I realize that I would be on television, not as a child star, but as a CFIDS kid. Recently my mom and I did two television interviews about what it's like to live with CFIDS. You may have that chance too, and if you do, you may want to know some of the things I learned.

Think About the Questions the Interviewer May Ask
While some interviewers will either tell you the questions ahead of time or even let you submit the questions you might want to be asked, many will not. But you can expect these kinds of questions:

What is CFIDS?
This question is very broad and covers everything from the history of the illness to the causes of CFIDS to what the acronym CFIDS stands for. Don't get intimidated by this question. Leave the medical facts to the experts. Just make sure your audience knows that CFIDS is a debilitating illness that affects the immune system and central nervous system, leaving its victims unable to function for years at a time.

How did you get sick?
This is your personal story, and it includes information such as how old you were when you got sick, how you knew you were sick, and when and how you were diagnosed.

Is CFIDS contagious?
Mom and I get this question often because we got sick within six weeks of each other. We say two things: If the illness has a viral component, then as with any viral illness, we were probably contagious in the beginning. But then we point out that the four other people living in our house do not have CFIDS. Mom often says something like, "Most epidemiologists believe CFIDS is not contagious." Try to avoid this question all together, but if you are asked, make sure to word your answer carefully. Read the Understanding CFIDS section of a recent The CFIDS Chronicle for an up-to-date response.

What are the symptoms?
Don't list every symptom you've ever experienced. Narrow it down to a brief description of five or six symptoms. Also, avoid using generic sentences like "I feel tired all the time." You don't have to give a ten-minute lecture about fatigue, but try to explain the difference between "CFIDS tired" and regular "I'll-just-take-a-nap-and-I'll-feel-better" tired.

How does CFIDS affect your life?
This is where you want to spend most of your time. Focus on ways to communicate the specific losses you have faced. Quantify your debilitation: "During the first three years of my illness, I lost 70% of my ability to function." "In the past two years, I have been able to be in school only one day a week." "My cognitive symptoms are so severe that I can no longer process words." "I was not able to graduate from high school." "I have lost most of my friends."

Is there a cure?
Interviewers will often ask if there is a cure for CFIDS. Sometimes they will even offer their own "helpful suggestion." Refrain from slugging them (see "Be mature" below). Tell them that while there is no cure, some treatments help some people with some of their symptoms. If you also have neurally mediated hypotension, you may want to mention that cardiologists are able to relieve some symptoms.

Where can people find help?
Tell the interviewer about The CFIDS Association of America. If you have a chance to interact with the interviewer beforehand, the producer is often able to put the Association's 800 number on the screen (800/442-3437) so that people can call in for information packets.

Some interviewers may try to sensationalize your interview, spinning CFIDS as a mass epidemic that's sweeping the nation. If an interviewer makes a rash statement such as, "CFIDS is a highly contagious disease that is spread through casual contact with puppy dogs," politely, yet firmly correct them.

Rehearse
By rehearse, I don't mean stand in front of the mirror and practice looking dramatic. We all know CFIDS affects the memory. By rehearsing the facts over and over, you should be able to remember them when the time comes.

Keep Track of the Time
Time flies when you're in front of the camera. Often, after the interview is done, you are left wishing you could have said more. So gauge your words carefully, spending only a few seconds on the unimportant questions, and more time on the important ones.

Talk to the Interviewer, Not the Camera
It's impossible to follow the various cameras. If you try, you'll end up looking like you have neck seizures. Instead, look the interviewer in the eye (not at the floor, as I did) and speak clearly.

Be Mature
Now is not the time to yell "Hi Ma!" and frantically wave at the camera. Likewise, don't think of this interview as your chance to be "discovered" by Hollywood. (You have CFIDS, for goodness sake!) On the other hand, don't try to hide from the cameras. They're just cameras; they don't bite.

So there are my tips. I hope they're helpful. Now go out and take the media by storm.

Alisa Vanderzalm, a YPWC of over 8 years, aspires to counsel adolescents. She and her mother, Lynn, were on The Family Channel's show "The 700 Club" in December 1996 talking about CFIDS.