VOICE! Fall '96:

Diet & Nutrition

By Heather Frese & Ann McErleane

Originally published in Youth Allied By CFIDS, Fall 1996

Diets. You know them, you hate them, you’ve got to stick to them. Almost every young person with CFIDS (YPWC) I know is on some kind of doctor-prescribed diet, each tailor-made, each a little different from the other. My own diet has me stripped to the bare essentials of protein, vegetables and caffeine-free herbal tea.

But I have a confession to make… "My name is Heather and I am a Diet Dropout." (Now’s the part where you smile brightly and say, "Hi, Heather!") Once I am committed to my diet, I can stick to it for months, scoffing in the face of temptation, merrily drinking my bottled water and munching soybeans until one day, without warning, my eyes will narrow with greed as my brain zooms in on the Hershey bar my brother is eating. What could one eensy, weensy, teeny, tiny nibble hurt?

The second that chocolate melts in my mouth I turn into a raging beast complete with wild hair, scheming green eyes and claw-like hands that paw through the junk food drawer with one goal in mind — sugar, SUGAR, I must have sugaaaar!!!!!! Then I will eat until I’m stuffed and get a glucose high for a while before crashing back to earth with either a migraine or a mild seizure. Usually this is enough to make me behave for several more months until I crack again. I’ll remember that I do feel clearer and brighter when I’m following my diet, and that sugar and gluten are bad. Then it’s time to face the music, start grilling the chicken and chopping the veggies.

Now, where were those Snickers bars? I want to find one, look it right in the eye and not even blink.

The CYA/Voice Dictionary

Here are some food related definitions, submitted by (in order of appearance) me, me and um, well, me. Enjoy!

Defensive Eating, n. Defensive Eating occurs when you load up on extra healthy food before a planned activity. Example: Before class my family observes me gorging on turkey, V8, peanuts and salad. Through a full mouth I can then say "What are you looking at? I’m practicing Defensive Eating!"

The Imallergic Excuse, n. Sometimes no matter what you say people don’t understand that you should not eat even a bite of their birthday cake/rolls/cookies. Saying, "I’m on a diet," garners gasps of dismay and explaining your entire CFIDS care plan can get tedious. This is when you should employ the Imallergic Excuse, by smiling and chirping, "No thank you, I’m allergic."

Sniggly, adj. Once you’ve violated your diet and cheated with, oh, say, pizza and ice cream, sniggly is the funny, happy, twirly way you feel just before you crash. Your personality shifts into high gear and you find yourself singing Broadway showtunes to anyone who will listen. The world is one big giggle, and you giggle enough to snort, which makes you giggle even more. Hence sniggly, a word you may repeat many times just for the fun of it.

The Voice Lettitorial
This edition of the Voice Lettitorial (the segment formerly known as "Voiceletter") comes to you from my friend and resident nutrition expert, Ann McErleane. Take it away, Ann!

Hi Heather! Today I am writing to you about my frustrations with diet in relation to CFIDS.

Of the various treatments I have tried, diet has been the thing which has most significantly influenced my health. Diet is the one tool I can use to influence my health, at a time when I have lost so much control, freedom and opportunity for decision-making.

It is often frustrating, after having put so much effort into my diet and seeing the incredible impact it has made throughout my recovery from CFIDS, to face such misunderstanding about diet and its impact on health. When I explain to people my diet and why I eat the way I do, it’s like they’re almost "afraid" of eating a healthy diet. Often they try to dissuade me from doing so, without having any knowledge about diet or nutrition themselves.

Many doctors will even discourage healthy diets saying it’s not "proven" that a good diet can help CFIDS patients but yet they will eagerly prescribe an experimental or "unproven" drug. While nutrition may not be proven to cure CFIDS or provide the quick fix we all so desire, there is absolutely no harm in pursuing a healthy diet. In many cases, especially with the anti-yeast diet, healthy diets have benefited CFIDS patients significantly by reducing stress on the body and helping to provide a healthy foundation for the body to begin to work towards healing itself.

In recent times, food has become loaded with chemicals and additives. Modern food processing removes a lot of its natural nutritional value. We have not lived long enough to see the true impact of these changes to the American diet. But as we learn more about our bodies and what they are created to deal with, it is apparent that they have no use for many of the things in food today, which create stress on our bodies, using energy that could be used elsewhere. Those foods could be replaced with nourishing, "whole" foods, which will support the body.

The relationship between nutrition and healing are so misunderstood, and often people don’t even try to understand it. They will try eating "healthy" for two days and then give up, saying "oh, it doesn’t work." Just like any natural process, healing takes time. If your body has been receiving the standard American diet for several years, damage is not going to reverse itself in a matter of days. It takes time for your body to build strength, detoxify and reregulate itself.

Many people fear change, especially dietary change. CFIDS has taken away many parts of people’s lives. Some feel that food is one small pleasure that’s left, so they want to enjoy the foods they are accustomed to. Dietary change must be gradual. Soon you will become used to new foods and those will become the foods you enjoy. Diet and lifestyle change can be used as a project or a goal, something that can be worked toward, something you can do for yourself, something that may grant a sense of overall fulfillment and well-being.

Discouraging a truly healthy diet is like closing off an entire range of options. When resources and opportunities are so limited for PWCs, ignoring healthy eating is ignoring a possibility for control and influence over our health.