The Mighty Logo

What Happens After You Get a Fibromyalgia Diagnosis

The most helpful emails in health
Browse our free newsletters

I have only told a small handful of people that I have been diagnosed with fibromyalgia. My parents, my husband and a close aunt. It’s not like announcing a pregnancy or a diagnosis like cancer, but is somewhere in between. Being diagnosed with fibromyalgia doesn’t actually offer any solutions; there is no plan of attack for it. A fibro diagnosis seems to be more of an affirmation than anything else.

Most of the people I have talked to about their diagnosis say they had symptoms for years, some even decades, before getting a diagnosis. When I asked them if it changed anything, the response was underwhelming. The most frequent response was, “I was just relieved to know it wasn’t all in my head.” I felt the same way when, after over a decade of pain, MRIs, x-rays, blood tests, specialists and physical therapy, my doctor finally connected the dots. It was more of a “toldya so” moment. I wasn’t a wimp, I wasn’t a hypochondriac and I was right!

So now what?

I am on some different medication now but aside from that life is the same as always. And people are just as dismissive now as they were before my diagnosis. It’s like despite positive proof from my doctors, people still shrug it off as a made-up disease. If they can’t see it and they can’t imagine it, then it must not be that serious.

When I asked the lovely gals in my fibro group how their diagnosis affected them, the response was heartbreaking. “I felt vindicated and relieved… that I wasn’t faking it or ‘crazy.’” How tragic is that statement? We have struggled in silence for years, decades with constant doubt from those around us. “My husband told me for 16 years that it was all in my head,” one woman shared with me. We as fibro patients are in a constant uphill battle. Battling the pain every day is one thing, you get used to it, you push through it and you do all you can anyway. The hardest battle for me is the emotional one.

A diagnosis does two things: 1. It confirms that we are not “crazy” and 2. It confirms that we are, in fact, going to feel like this for the rest of our lives. Can you imagine realizing that this will be permanent, and in the midst of your mourning and sadness, you are probably standing there alone. The diagnosis is for the patient and is irrelevant to everyone else. When I was diagnosed, my husband just shrugged. Granted, he is the most supportive, helpful person in my day-to-day life, but still it felt heartbreaking. Here I was, stunned to find out that not only am I not a hypochondriac but that my body will forever function this way, and all my husband could do was shrug? Like it was nothing more than a word.

But that really is it. Fibromyalgia is simply a word. Ask anyone who has it and they will probably agree. We are so used to living this way, and even more used to being disregarded, ignored, neglected and mocked, that we use that word as proof. Fibromyalgia is a diagnosis that says “I am not making this up!” When someone rolls their eyes at us, we can say “I have fibromyalgia” in defense. We have to defend ourselves from the sarcasm, from the know-it-alls who like to tell us some yoga and and sleep will cure us, from the doctors who accuse us of being pill-seekers. I have heard stories of people having to defend themselves from loved ones, husbands, children, employers and doctors. We are supposed to be reducing our stress yet we are in a constant state of defense, ready for battle at any moment with our diagnoses as our shield.

A woman in my group said at first she was depressed after her diagnosis but “then I decided to pull myself up by my bootstraps and deal with it. I realized that millions of people have chronic illnesses that they live with. And I also decided to be grateful that I finally knew what was wrong with me and that I wasn’t just a lazy wimp. It was very validating.” She nailed it. A diagnosis validates us but it shouldn’t change our lives. It is simply a word to describe everything we go through every day. It’s not like when we get diagnosed we automatically become bedridden. We keep raising our children, going to work, swimming, writing, and so on. We do what we always do — push ourselves harder than we think is possible every single day. A diagnosis should empower us to take control of our disease and find ways to live our lives as best we can, it should give us a voice to speak up and be heard and find friends like us, and it should make us realize that we are stronger and more powerful than we could have ever known before diagnosis. And most of all it should tell you that you matter, your voice counts and that you can keep going.

We want to hear your story. Become a Mighty contributor here.

Originally published: November 3, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home