Wednesday, June 3, 2009

Education is Key

When I first started getting sick in my early 20's, I disregarded the symptoms. I thought I was just feeling "under the weather," so I did what any normal, healthy twentysomething would do under those conditions...

I ate a healthy diet, took vitamins, and exercised.

The more I exercised, the worse I felt. Unfortunately, conventional wisdom told me to "push through" and eventually I should start feeling better. I kept pushing myself physically for about two years (ages 22-24) until I was too sick and too exhausted to work anymore. And then even when I was sicker and more exhausted, sleeping 16 to 20 hours a day (ages 24 and 25) and running low-grade fevers all the time, I continued to follow this "healthy" way of life during the few hours I was awake each day. (I should probably mention that the kind of exercise I did involved full-contact martial arts and working out at the gym.)

I did not understand that I was making myself worse.

It was finally after I got diagnosed that I stopped exercising almost entirely...not because I don't like to exercise (up until my illness I had been active all my life), but because my new doctor helped me come to the realization that my body could not keep up with my physical activity. I was, in fact, depleting what little energy my body could create. I miss exercising very much, but whenever I've tried anything (even light exercise), it has been too much for my body to handle. For now I have decided that going up and down the stairs at home and at work and getting through the day is exercise enough. Once I'm healthy again, I'll continue working toward my black belt.

Because of my own lack of awareness of CFIDS and because of the general lack of awareness in the medical community, I believe it took me longer to get diagnosed than it should have. I went from doctor to doctor telling them that "something" was wrong, but I that didn't know what. I told them all my symptoms (which, if you look at the blog post on my symptoms, should have at least pointed them in the direction of CFS after they ruled out other diseases) and gave them my complete medical history, including my family medical history.

One doctor told me that my problem was all allergies and pretty much dismissed me. (By the way, that doctor also worked for the NIH...) The next one told me that I looked healthy and that I was probably going out and partying too much. (Seriously? Last I checked, sleeping all the time was not a party.) Another doctor told me that CFS wasn't a real disease and tried to convince me that I was just depressed. (In a rare moment of rudeness, I asked him if depression caused fevers...because I was constantly running a low-grade fever. He didn't really have much of a response.) These doctor visits were not that long ago. In fact, all of them were between 2001 to 2005.

My story of going to multiple doctors is not unique. It is because of my own experiences and other patients' experiences that I have come to realize education is key.

Medical professionals and the public alike need to be educated about this disease. If CFS became a mainstream healthcare concern (Swine Flu, anyone?), then the general public and healthcare workers would be able to better understand the disease and the people who have it. Better yet, patients wouldn't go undiagnosed for as long. We would not have to feel afraid of being misunderstood. Doctors would stop treating us as if we were imagining things or psychologically disturbed. Schools, employers, and the government would take us more seriously and grant us the accommodations we need. More friends and family would better understand and support us.

Life would be so much better for so many people.

This is why I've decided to speak up more and share my story. I want to make a difference.


Jozephine said...

Hi Alyson, Good to find your blog. I had a similar experience with getting diagnosed, especially since I had previously suffered from depression and anxiety.

There are doctors out there with an open mind and I have been lucky enough to find a couple, but only after years of struggling with a 'mystery' illness.

Keep banging the gong and attitudes will change eventually.

klbrowser said...

Hi! Found your blog thru the CFIDS newsletter. Altho I've been diagnosed with fibromyalgia, my road to diagnosis was similarly long and fraught with disaster.

I got a diagnosis in 2000, after being ill three years. But that didn't even help sometimes as there were docs telling me that all I needed was a shrink. I finally got my various ailments all sorted out and had a good course of treatment going, but then I had to move to another state in 2006, and my new docs were telling me that I could be cured with exercise!

I agree that spreading the word is one of the best things we can do. If more people know of someone who has this type of chronic illness, perhaps there will be more incentive to do proper research. And maybe more docs will take us seriously.

BTW, I blog too.

alyson said...

I'm glad you were eventually able to find doctors who took you seriously. It's a shame that going from doctor to doctor is such a common experience for people with chronic illness.