Researchers identified five major themes surrounding this anxiety:
- Social loss and adjustment
- Uncertainty and unpredictability
- Feeling vulnerable
- Feeling "different"
- Effort made toward recovery
Much of the experience of study participants was identical to that of adolescents with other chronic illnesses. Additionally, kids with chronic fatigue syndrome felt anxious over several things that were directly related to the condition, including:
- Feeling unable to explain their illness
- Disbelief in the illness
- Distrust from adults
When you're involved in the patient community, none of this is surprising. It's also easy to see that most of it applies to the adults with this condition as well. However, it's worthwhile research because it gives the medical community a better understanding of what these kids are going through.
I am disappointed that researchers didn't address physiological reasons anxiety, several of which have been linked to the adult form of the illness.
I wasn't diagnosed with fibromyalgia until I was well into my 30s, but I've had chronic pain and fatigue for most of my life. I can definitely relate to what the kids in this study are going through (although I'm sure their health is far worse than mine was at their age.)
I can say from experience that when the adults in your life don't believe something is wrong, it's devastating. You doubt your own experience, question your sanity, and learn to hide it and try to act "normal." As a child, I was ashamed of my pain and other problems, and that's given me extra hurdles as a chronically ill adult.
I hope this study makes doctors, parents and teachers take a look at their attitudes toward these kids, so they can stop compounding the problem and focus on positive steps.
What was your experience with illness as a child? Do you think the factors identified in the study contribute to your anxiety? Leave your comments below!
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