for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance
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Introduction

It's hard to understand an illness that you can't see, whether the person ill is your child, friend, relative, student, patient, or neighbor. Did you ever think about how difficult it must be if you are the person with the illness, trying to explain it to others, when you may not understand it yourself?

Imagine being a kid who is always sick, struggling just to sit upright, walk a short distance, or concentrate. Coping with disabling symptoms is enough for most people; explaining those symptoms to new friends, teachers, and doctors is a real challenge. When kids with chronic illnesses go back to school in the fall (or are unable to go back to school...) they may find themselves explaining their illness and needs all day.

It's especially hard for children and teenagers in this position because even though they find their illnesses overwhelming and confusing, they must put up a brave front and explain their life to disbelieving adults and peers. It's very stressful when authority figures like teachers and doctors pressure kids to explain their abilities and limitations. Kids are placed in a terrible position when the adults they depend on suggest that they are exaggerating their symptoms simply because they cannot be seen. The impact on their self-esteem can be significant.

Kids and parents who know about having invisible, chronic illnesses have bravely answered many of your questions below. They want others who are ill to be able to use this booklet to explain what their daily lives are like. We hope this tool will help you glimpse the obstacles they face, their resilience and courage, and the ways that they are just like any other kid. Most of all, we hope it will help you envision ways you can reach out to them and their parents.


Do you need medical information?

The three conditions these students write about are Fibromyalgia, Orthostatic Intolerance and Chronic Fatigue Syndrome (which is also known as Chronic Fatigue and Immune Dysfunction Syndrome - CFIDS - and as Myalgic Encephalomyelitis - ME). If a teenager is diagnosed with one of these conditions it's common for them to soon be diagnosed with one or both of the remaining two (i.e. a youth is diagnosed with CFS, and soon is also diagnosed with Orthostatic Intolerance). The symptoms used to diagnose the conditions overlap, some research suggests common physical causes, and their impact on daily life and education is quite similar.

Medical articles and brochures are available to explain the diagnosis and treatment of these conditions. See www.pediatricnetwork.org and the final page of this booklet for resource lists. Today, we want to focus on kids' voices, as they explain how they feel, how illness impacts time spent with their friends and schoolmates, and what they want their family, doctors, friends, and teachers to know.



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Disclaimer: The views in this website and forum are the feelings and opinions of the individual authors and do not necessarily reflect all of the current theories that are being explored and published. Ask your doctor or other health care provider about all medical information that you consider applying to your situation, including the information you read in our website and forum. We take no responsibility for the decisions you or your family members make about medical care. It is up to you to verify that the information you read is correct and applies to your unique situation.