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The Change I Made 5 Years After My Fibromyalgia Diagnosis

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I have a chronic illness

Those words are still difficult to say.  

I have lived with fibromyalgia for over six years. The road to my diagnosis was complicated, as it is for many people. I was always exhausted and always in pain, and it had become obvious this wasn’t “normal” for a 26-year-old.  

After going through a bunch of testing and ruling out everything else possible, I was given a name for my condition. I was also told medicine was an option “if things got too bad.” I said “No, thank you, I can manage” and went on my way. 

I didn’t want to be seen as weak. What doesn’t kill you makes you stronger, right?! And this wasn’t something that would kill me; it would just be uncomfortable. I could deal with that. Nobody had to know. I was tough. 

Eventually, though, some people did have to know. So I told those closest to me. I told them I had this thing called fibromyalgia, and sometimes it made me extra tired, and sometimes it made things hurt that wouldn’t normally hurt somebody. 

I left out the part about how on any given day it could be a massive struggle just to get out of bed because I felt like I had just slept with every muscle in my body clenched as tightly as possible, and it hurt. Or how when I had a flare, I honestly could not even lift my arms above my shoulders because they felt like they weighed 100 pounds each. Or how I couldn’t remember the last time my body was actually relaxed because my nerves are always sending messages to my muscles to tighten up. 

I didn’t want people to think I was complaining. I didn’t want pity, and I knew they wouldn’t understand. How could they? They weren’t inside my body! 

I even downplayed my symptoms to my doctors: “Yes, I have fibromyalgia, but I’m doing great with it!” Honestly, it was making me miserable. But I couldn’t do anything to change my situation, so I was dealing with it. 

Or was I? 

After five years of living like this, I finally realized I could do something to change my situation. I could accept my diagnosis. Like, really accept it. Realize I now have limitations I don’t always like, but that doesn’t mean I am weak.  That there are things I can no longer do, but there are plenty of things I still can do. That there are times I am going to have to tell people no, or ask others for help, and that is OK. 

Most of all, I needed to be honest. With myself, with my family and friends, and with the universe at large. And by being honest, by listening to my body and doing what it needed, I was taking charge and living my life on my terms as much as I could. 

And then I realized by talking about what I was going through, I could help others understand they are not alone. It isn’t about complaining, it isn’t about whining. It’s about opening up and being real with both my struggles and my successes. And hopefully inspiring others to do the same. We can all help each other.

Follow this journey on Happiness Through the Fog.


Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.

Originally published: February 27, 2016
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