Fibromyalgia Awareness Day 2019: May 12

Since my first time writing this, when I was newly diagnosed with Fibromyalgia, I have also been diagnosed with Ankylosing Spondylitis and Rheumatoid Arthritis. I have learned that the diagnosis of a chronic illness is a heavy burden to bear. You are faced with doubts from strangers and family as well as myths perpetuated by the internet. Our illness, while it may be invisible, is very real to us within the community and I feel so privileged to be among the many warriors out there trying to make a difference.

5 Myths of Fibromyalgia

  • Fibromyalgia is really a matter of being overweight. Get into shape and you won’t have the problems any more. It’s actually not an issue of being overweight, although being overweight does not help. The cause of fibromyalgia has not been linked to being overweight and many people who are considered to be very fit, i.e. Lady Gaga and Carry Ann Inaba, have fibromyalgia. We need to focus less on blaming the person and focus on how they can improve their lives and perhaps, improve.
  • Organic, Vegan, Gluten-Free, Non-dairy, or Inflammatory Diet is the cure. No, it’s not actually. You can certainly adhere to any diet you like and it may even benefit you in many ways for a variety of reasons, but it won’t cure Fibromyalgia. There is no known cure for it because we really don’t have a firm idea about why it happens in some and not others. It’s important to remember that we’re all unique and we’re all in different circumstances with different beliefs and what works for you or what fits in your life-style, may not work in others. Having respect for all warriors is important.
  • Choosing to treat your Fibromyalgia holistically means you don’t want to help yourself and the reverse of that. As I just said, we are all different and we all come with a predetermined set of ideas. Some of us will be open to try holistic measures, while others, who’ve only tried holistic methods, will be willing to try medicine. I’ve seen many fights regarding this and I don’t understand why. We all have to make decisions based on what is best for us and our family and also, very importantly, what is available to us.
  • It’s a Princess disease and just means you’re lazy. I really hate this one. It’s hurtful, not to mention mocking of a disease that is very real and very painful. Those of us who suffer with fibromyalgia are neither lazy or adverse to working. And those of us who find ourselves unable to work because of the illness are often devastated. The problem with this particular myth is that we get much of our identity from our job, not to mention money. Being unable to work and needing to rely on help is crushing.
  • Fibromyalgia isn’t debilitating. Here is another that makes me grind my teeth. It implies that all illness and all pain should be measured by some standard that is written in a book somewhere, when we know that illness affects people differently as does pain. How I process pain is going to be different than you and yours will be different than your friends and so forth and so on. I wish pain was viewed as uniquely as we are human. I wish it was respected and not compared. Fibromyalgia can be very debilitating for some while others manage it better; but even those who find it debilitating may go on with their lives, may perform activities which someone else with fibromyalgia would never consider and still, it makes it no less debilitating. I would use Lady Gaga as an example here again, because she performs in a way I could never do, but I would never dismiss her pain or say she was exaggerating. Her fibromyalgia is debilitating and so is mine.

One response to “Fibromyalgia Awareness Day 2019: May 12”

  1. It seems like with every disabling condition, there are a panoply of myths surrounding it. There is this magical thinking that says a disabled person can be miraculously cured. I’ve dealt with all of that, and I can relate to what you’re talking about.

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