Fibromyalgia: The Unbelievable Diagnosis

“Suck it up. Learn to deal with it.” 

“You’re not in as much pain as you claim. There is no way you have a pain of seven on a pain scale of ten when you look fine.”

“Your feelings of depression and pain are a part of motherhood. Nothing is wrong. You’re normal.”

These are just some of the things doctors told me in the years prior to my diagnosis of fibromyalgia, chronic pain, generalized anxiety, and depression in 2012. In the previous six years to that diagnosis, I lived in daily agony unaware of the cause of my pain. It was a painful six years, but the most hurtful part was the doctors not really listening to me and taking my condition seriously.

Last month, May, was Fibromyalgia Awareness month in the United States, and Fibromyalgia Awareness Day was May 12. This is an important month to raise awareness and phase out the stereotype associated with this invisible illness. We want to abolish the mantra “you don’t look sick” and replace it with acceptance and understanding of a seriously complicated illness.

This article was originally published in The Fibromyalgia Magazine, June 2016 edition.

Actual Experiences

During my research for this article, I reached out to my readers and fibromyalgia groups asking for their experiences with physicians and loved ones prior to their diagnosis. The results were staggering, appalling, disappointing, and infuriating. I was thankful for the feedback in order to write a more informative article, but it was heartbreaking and saddening.

The following experiences are real, with permission to retell using first names only.

Stacey: “…seeing a rheumatologist who said ‘fibro’ does not exist and there has to be a real problem followed by the most painful exam I have ever experienced leaving me sobbing! Followed by a neurologist who said the same thing [and] basically just blew me off! It was horrible and crushing…”

Gin: “It’s all in my mind.”

Rebecca: “…My mother to my kids ‘there’s nothing wrong with your mom. She just needs to stop looking for a handout and get a job’. [The] same woman labeled me a hypochondriac…”

Amy: “Lose weight, get your stomach stapled or you will never walk well. Drug-seeking.”

Lydia: “I was told fibro isn’t real. That it’s like a mental disorder, like being a hypochondriac and I would be better if I lost some weight…”

Sarah: “My family thinks that I am faking my fibro and my pain levels…If either [my mom or sister] spent a day with a portion of our pain levels, they would spend the day in bed and probably cry the majority of the day.”

Thoughts on these experiences

Doctors are medical experts with in-depth knowledge of how our bodies work. They are the “mechanic” to our bodies to keep us healthy, and deal with issues should systems go haywire. We, as patients, look to them for advice and trust they will lead us to heal when we need it. We see them as open-minded, ready to receive our symptoms in exchange for a diagnosis to begin treating. Unfortunately, in a large percentage of experiences, this is not the case. In fact, it is our physicians that are the first to dismiss, minimize, or discredit our physical and emotional pains.

Doctors are not the only ones to blame for a lack of understanding and concern. In many cases, it is our loved ones – the ones we look to for support and understanding – that also turn their backs on our pain and suffering. Without living the daily pain and symptoms of fibromyalgia, they are left with little knowledge of the true physical, mental, and emotional agonies caused by this crippling illness. Our concerns should not be discarded as though our opinions mean nothing. Belittling, mocking, or berating is not healing in any sense, and only causes further damage.

Conclusion

We, as fibromyalgia thrivers and caregivers, need to be better advocates for ourselves and stand up to doctors and loved ones in order to better educate the unknowing and help future fibromyalgia sufferers. It is up to us to make a difference by voicing our experiences and reaching out to others to offer the support so many of us need.

With all the feelings of rejection and being discredited as having a legitimate problem, the condition is worsened, a seeking to find a cure is hindered, and proper healing cannot begin. Let us stand together as a united front in order to spread awareness, and allow us to be as well as we can be sooner rather than later.

The experiences shared by the men and women moved me to tears, but strengthened me to push harder and reach further with my mission to globally spread awareness. I promise to write each future article with each of these men and women in mind, and never falter in my dedication to educating others about fibromyalgia.