This week I’d been having a particularly bad spell. My joints were more painful than usual and very swollen which never used to accompany the joint paint. My migraine, now on day three, had gotten to that phase where sitting up or even thinking about standing made my skull throb and feel like it was going to explode.
My neck felt like it could no longer hold the weight of my head. I was struggling.
I wanted to have some blood-work done to see what, if anything, was causing this new flare in symptoms. I was writing my doctor to ask what tests to run. I wanted my SED rate checked to see if the level of inflammation in my body was as high as it felt. Because if it resembled anything close to the misery I was feeling, I was thinking (hoping) the blood-work would reflect that.
It didn’t take long to realize what a crazy thought that was… Was I really just hoping, no, wishing my blood-work would come back with poor results!? Yes. And I’m not afraid to admit that. As a Lyme patient I am so hypersensitive to blood tests not reflecting my illness, my real, chronic, debilitating illness. Because I’ve been told over and over by so many, that my tests were indeterminate, or my blood results were ‘fine’ or heard, “We just can’t find anything wrong with you!” or, “You’re a medical mystery, sweetheart.”
As patients of Lyme it’s become a reflex for most of us to be on the defense 24/7. “No, really I’m sick.” “Yes I know what that person told you but this is real” or sheepishly repeating “Lyme Disease” to the ER doctor standing over your stretcher, indignantly standing his ground that such a diagnosis doesn’t exist, and therefor you must be crazy. An unspoken shame I’ve become accustomed to.
My symptoms are as real as the chronic disease that has caused them. My pain is as legitimate as anyone else’s… So why do I still feel like I need justification? Why do I still want tangible results to validate the way I feel?
Because, Lyme Warriors, this is as much a symptom of this disease as the joint pain and the brain fog; the relentless need we feel to prove we are sick.
Please always remember how strong you are. And that fighting this fight, is something to be proud of.