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The Misperceptions About Fibromyalgia That Make It Hard to Get Disability Benefits

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For Yolanda.

When I was diagnosed with fibromyalgia, I didn’t know much about it except that people with it were in pain. It was the “pain disease” in my mind. After doing my research, I realized that it affects people in more ways that just causing musculoskeletal pain throughout the body. Fibromyalgia can affect sleep, memory, fatigue, and mood, all of which I was dealing with. More than just being pain in my body, fibromyalgia is the reason I am always tired, why I can’t remember simple things, and why my sleep pattern is more like a series of long naps than it is solid sleep. It, like my depression, can be debilitating.

Think about it this way. When you are in pain, you’re in a heightened state of stress. Your blood pressure rises. Your breathing can become labored. Your heart beats faster. You are in distress. Now, imagine having that feeling all of the time, in addition to be so exhausted you sometimes fall asleep over your plate when you’re out to dinner with your husband, and you can’t remember what you did yesterday because your memory is like a black hole. And remember, you’re in excruciating pain. People with fibromyalgia, people like me, often live their lives in agony.

However, despite this being the case, there are a number of common misperceptions about fibromyalgia. I’m reminded of the time when I parked in a handicap spot (I had my tag visible) and got out of the car. Before I could grab my cane, I heard a disgruntled woman say, “She doesn’t look handicapped! She should save that spot for someone who needs it!”

Fibromyalgia is an invisible disease. A common perception of fibromyalgia is that people with it are only in pain sometimes. My friend told me that if her family sees her having fun, they assume she’s exaggerating when
she says she’s in pain. My family frequently asks me if I’m in pain. I know they do this because they care, but the answer is always “yes.” Another myth about fibromyalgia is that if we rest, we’ll feel better. This is not always
the case. Sometimes we feel worse. Our gas tanks run on empty frequently and unexpectedly. Yet another fallacy is that it is only about pain. As I mentioned before, it affects our cognitive abilities, our sleep, our energy, everything. Yet another common misperception in people’s thinking is that the pain is in our heads or made up somehow.

Perhaps because of these common misperceptions, it is extremely hard to advocate for and receive disability benefits. Visible disabilities are seen as more legitimate than invisible ones like fibromyalgia. My good friend tried three times over the course of three years to get disability benefits, and she was denied each time. She was initially denied because she was told that fibromyalgia alone isn’t considered a disability because “it’s not something a doctor finds — it’s a condition made up of symptoms the patient reports.” With this mentality, how would it ever be possible for my friend to get the help that she needed and rightfully deserved?

It’s hard to prove something people cannot see. I was discouraged when I sought out benefits, as well. When you apply, you put in a lot of work and raise your hopes, and you are prepared to advocate for yourself over a period of several months, and the rejection can be devastating because you have to start over. For some people, it discourages them from doing the process repeatedly or even at all.

What I want people without fibromyalgia to know is that this disease creates chronic and widespread pain throughout our bodies. It affects every aspect of our lives. It is not made up, in our heads, or created for attention. We would not wish this on our enemies. Just because you cannot see this illness does not mean that it does not exist. It is narrow-minded to assume that because you cannot see it, it must not be real. I want people without fibromyalgia to listen to us, to hear our stories, and to advocate with us for better care and for disability benefits.

What I want people with fibromyalgia to remember is that we are not alone. There are so many people who also have fibromyalgia. Sometimes it’s easy to think that you’re the only one struggling with this. You have brothers and sisters in chronic pain, too. I have to remind myself that there is a community out there for people like me. When things like disability benefit fights are lost, we must rally together to create change for ourselves and for others who are struggling.

We all deserve the best quality of life. Fibromyalgia is a very serious and very painful disease that affects all aspects of our lives. We deserve disability benefits. We deserve to be heard and for our illness to have more recognition.

Getty Image by MangoStar_Studi

Originally published: August 15, 2018
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