The Truth Is a Powerful Medicine: Living with Fibromyalgia and Chronic Fatigue Syndrome, Part I

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This article was written exclusively for MyFibro.com by K.C. Jones. In honor of Fibromyalgia and Chronic Fatigue Syndrome Awareness Day coming up on May 12, K.C. dispels some myths about these conditions by sharing her personal experience with them.

I was diagnosed with fibromyalgia and chronic fatigue syndrome (CFS) in 2009. At the time, my illnesses were so severe that I had to quit my job as an appliance salesperson, which really was probably a blessing in disguise as the job was very stressful.

Unfortunately, not a lot is known about fibromyalgia and CFS, so a lot of myths and harmful misconceptions abound about these two illnesses. I am going to talk about the unfortunate things that people have said to me about my diagnoses and how I deal with them. Some of the myths were also inspired by my friends as I asked for their feedback about the invalidating things that had been said to them too.

'You Don't Look Sick'

Fibromyalgia and CFS are invisible illnesses; therefore, it can be very hard to get people to believe that you actually are as sick as you feel. Unfortunately, this applies to doctors too.

Back in 2009, I scheduled a visit with my doctor because I was experiencing excruciating pain all over my body. My feet hurt the worst, and I was also extremely tired. I absolutely loved my primary care physician, who I had known for years. Unfortunately, he didn’t work on Fridays, so I had to see one of his associates, who I did not care for at all.

The Doctor Dismissed My Symptoms

This other doctor was very condescending and invalidating. I told him about my aches and pains and extreme fatigue, and he just waved all of my concerns aside. He dismissed all of my symptoms by saying he thought they were just the side effects of one of the medications that I was taking and that I would feel better soon.

I overheard the student doctor (my doctor’s office also trains student doctors) voice his opinion to the doctor that I may have fibromyalgia - this gave me hope, for perhaps this student would be my ally! After the doctor left, I was visibly very distraught, discouraged and frustrated, and I told the young student, “I just don’t feel like I was heard or taken seriously at all!” Fortunately, the student was empathetic and took pity on me. Apologetically, he recommended that I schedule a visit with my regular physician for Monday to get a second opinion.

So I Got a Second Opinion

I am so glad that I followed his advice! When I arrived to the office again just a few days later, the student doctor smiled at me encouragingly and explained his hypothesis to my doctor, who after asking a few questions and doing a few little tests, agreed that what I had was most likely fibromyalgia and chronic fatigue syndrome.

He explained that not much is known about the cause, except that it seems to first manifest itself during periods of high stress. He also tried to make me feel better by informing me that many people’s symptoms go into remission after a while, but just having a proper diagnosis made me feel better!

I wish that I had seen my regular doctor first and could have been spared the additional pain of being totally disregarded by the associate. I wish that everyone who has been put in that kind of situation gets to meet someone like that student doctor, who was able to help me get my needs met. No one knows one’s body like the person who is experiencing the pain him or herself. I am glad that I stuck to what I knew - to be true about my own body - and that I did not give up until I felt like my concerns had been properly heard.

Click here to read Part II.


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Fibromyalgia is a prevalent condition that affects many people in the United States. Approximately 3.7 million Americans have Fibromyalgia. That is 1 in every 73 people.

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