I detest the describing myself as “unemployed.” I was filling out some paperwork recently and was asked to select from four options-employed full time, employed part time, on disability, or unemployed. While my illnesses and chronic pain prevent me from working, I am not yet receiving disability. So I selected unemployed, adding the caveat that I am disabled. 

So, why is this such a sore spot for me? 

Because being sick is a full time job. My job every day is to listen to my body, to take care of it, and to do all I can to mitigate my symptoms. My job is also to keep track of numerous appointments, filing deadlines, and new referrals. I spend hours upon hours a week researching treatments, reading about others’ experiences with my conditions, and documenting my symptoms so the doctors can have an accurate picture of my health. 

There is no PTO, there is no vacation. This is an all-day, every day thing. It’s literally life or death. (Okay, that may be a bit dramatic!) 

In the last year, my illnesses have forced me to become a secretary, an insurance expert, a lawyer, a historian, a geneticist, a researcher, and most importantly, an advocate. If I don’t advocate for myself, no one else will. I have fought long and hard to get to this point. 

I am not unemployed. I am an advocate for my health. I am fighting for my life. And being sick is my full time job. 

Recently, I was involved in a debate online about pain medication and the opioid epidemic. The OP wanted opinions on how we can still adequately manage chronic pain patients amidst this devastating epidemic. I chimed in and was met with so many supportive responses and a resounding “me too” from so many who have had similar experiences to my own. It was encouraging to see so so many who not only have shared my experiences, but to hear some feasible suggestions from so many. But of course, there is one who has to be ugly. 

It started as a genuine attempt to try to illustrate the same experience from the other side of the curtain and, like most things on the internet, rapidly devolved from there. As with any discussion about pain (and invisible illness in general), comments attributing most pain to excess weight and lack of physical activity were made. As an invisible illness warrior and chronic pain sufferer, I felt the need to reply to this to illustrate my own experiences with chronic pain following a car accident in my early 20s. I stated that I weighed about 110lbs and my back pain had nothing to do with my weight, rather with the fact that my vehicle was at a dead stop and hit by an SUV traveling at about 45MPH when it struck me. I also mentioned that I was an athlete my entire life, up until recently. Given the context of the comments, I wanted to illustrate a different story than the one that is evidently so common and the reason so many providers are almost indifferent to chronic pain and the very real people who have it. I was saddened to read the response…basically, I’m some weird exception and this isn’t the case with the overwhelming majority. But more concerning to me was when chronic pain patients were told to keep their victim mentalities since they didn’t want to try to see things from the other side.

This one was unacceptable, to tell me I’m being defensive when I stand up for myself and other chronic pain warriors is one thing. You’re damn skippy I’m defensive. I have lost so much to chronic pain and chronic illness that I will never, ever have the career or life I set out to have. I have had to alter my dreams and plans to fit my chronic pain and my EDS. (That’s a story for another time) But this attitude is exactly what is wrong with healthcare today. This attitude is why so many of us “spoonies” often succumb to depression and develop anxiety. I am taking a stand…I will yell it from the mountaintops, I will tell whoever will listen to little old me…I AM NOT A VICTIM! 

I am not a victim. I AM A SURVIVOR. I AM A WARRIOR. I AM A FIGHTER. And I will continue to fight for myself and others who are doing the best they can to live with this thing called chronic pain. 

I may have EDS, but I AM NOT A VICTIM. And no one, especially someone who is supposed to “do no harm” should EVER use these words to describe someone with chronic pain. Just because you can’t see my disability, IT DOES NOT MEAN IT’S NOT THERE!!!