Combating Invisibility: Part II

Friends and Acquaintances-

We can, however, educate our friends who do care about us – because in a sense information about fibro does affect them, even if they don’t live with the actual symptoms. As we change and our energies and capabilities become somewhat more limited, so do the activities we used to enjoy with these friends. And so learning what this is all about helps them to understand that we are not rejecting them.

We may also need to educate those we work with and for, if our work performance may be affected. As a college professor, mine was severely hampered – to the point of having to quit – by the fibrofog that results from a lack of good sleep. I lost track of my words too often in lectures. Fortunately, the dean of my college took the time to understand what was happening and helped me to withdraw gracefully.

But another job I hold, writing for a garden-related company, was not really affected by things, other than the fact that I needed to have someone ride herd on me to remind me of approaching deadlines. I was touched that my boss took the trouble to clip newspaper articles and even send them to me. And she found me a project manager who is great with reminder notes.

Sometimes, in these situations a few good articles from magazines or newspapers, or printed off the Internet may be all the education these people need.

Our doctors - With the best will in the world, a doctor cannot possibly keep up with all of the different medical problems that they deal with each day. There is simply too much information out there. But if our doctors are willing to listen to us, and to learn (as all good doctors are) then we can play a significant role in our own treatment by educating ourselves, understanding the symptoms, and keeping abreast of the latest information. When that information affects our treatment, we have the responsibility to pass it along to our doctors. After all – we have only ourselves and our condition to keep track of.

This doesn't require that your doctor schedule hour-long appointments where you can deliver lectures about what you have learned. Copy relevant articles. Write down pertinent information and give it to the doctor at your regular appointment. But make any information you find easily accessible for those responsible for your medical care.

Our families - Those to whom we are closest

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