For the first few years after my diagnosis, I hardly mentioned my illness to anyone. During college I found I had taken on more than I could handle, and so I began mentioning my illness to professors and others who needed to know what was going on. Doing so made me realize how misinformed people are.
I quickly learned I had to explain my illness to anyone I mentioned it to. Few people were familiar with it. Those who were either had a relative with fibromyalgia or had seen “that episode” of The Golden Girls (a two part episode called “Sick and Tired,” in which one of the main characters, Dorothy, is diagnosed with chronic fatigue syndrome after a struggle for a diagnosis).
Trying to explain these illnesses or counter misconceptions was exhausting. Most responses were along the lines of “What’s that?” or “Oh, would you like me to get you a cup of coffee?” A few people have even confused my illness with narcolepsy.
I’d constantly be told to go home and get some sleep; I found it aggravating because I knew sleeping wouldn’t make me feel any less tired and I didn’t want to sleep my life away. It seemed like no matter how many times I explained that to people, they still ended up telling me to go get some rest.
Mentions of pain were followed by offers of Tylenol. Did people honestly think that I’d complain about pain if a simple over-the-counter pain reliever alleviated it?
Even worse is dealing with doctors. They have told me everything from I’m just depressed to I just need to exercise. Others have sent me to the emergency room because of all the symptoms I have.
One time, I was sent to the emergency room because my pain that day happened to be in my chest and, as usual, I had numbness and tingling in my arms. The emergency room doctor asked if I was experiencing any fatigue, and to make sure he understood that wasn’t unusual for me, I mentioned my illness. He looked at me and asked, “And just who diagnosed you with that?” I could tell by the way he said it that he thought I was a hypochondriac. After the test results came back, the doctor told me that the pain was probably nothing, but if it got worse to make an appointment with a cardiologist.
We also have to deal with a lack of respect. We don’t look sick, so people assume it can’t be that bad. Additionally, everyone gets tired, and those who are overworked certainly feel exhausted all the time. Everyone has also dealt with pain to some degree, as well as many other of the symptoms we have. What they don’t understand is the severity and the fact that it doesn’t go away. Not only is the fatigue so bad that even sitting up can be difficult, but there are also the rest of the symptoms that come, go, and vary constantly.
I have come to accept that some people will never understand these illnesses. I do my best to educate those who are willing to learn about them, while trying not to be bothered by those who don’t get it.
On a positive note, awareness is slowly improving. Just in the past few years I have noticed a difference in the amount of people who have at least heard of these illnesses. Most people still need to be filled in on what exactly they are, but it’s a start.
What is the most frustrating thing anyone has ever said to you?