It’s been 15 years. 15 years since the scary onset of symptoms that could no longer be ignored as a flukey coincidence. 15 years since I learned the value of being able to rely on your body, and the despair of having it actively working against you. 15 years since I had to start redefining what a “good” day was for me.
I don’t have anything inspiring to say about perseverance. The mentality to just keep going until I dropped isn’t something I strove for, and it most certainly is not as admirable as people seem to think it is. In 15 years I can finally see the world of damage I do to myself every time I ignore flares and try to just keep going. It’s not courageous, I’m not a warrior, I’m not strong, I’m just a degenerating version of the old me clinging hopelessly to the want to be “normal”. This week, especially, has pointed that out to me in glaringly obvious ways.
In the coming weeks I have such an amalgamation of appointments for my various issues that I feel like I’ve reversed time back to first being diagnosed. Seeing specialists, running test after test…only this time around it’s to see how much damage I’ve done since the last round of appointments and testing. Time to discontinue some meds, add others, be poked, prodded, shocked, stuck in claustrophobic tubes, and flipped around on medieval torture tables all while crossing fingers and toes (and hoping I can uncross them after) that brain surgeries aren’t brought up again. Call me vain, but aside from the obviously fears of my skull being opened up, I’m not ready to be GI Jane again.
It’s easy, though, to start falling into the invisible illness trap, and that’s how we ended up booking all these appointments. When you’re oh-so-kindly cursed with chronic conditions that don’t show obviously to others you learn how frustrating it can be to vent. A simple “I just don’t feel good today, I’m so tired” which ENTIRELY minimizes the lead weight of fatigue you’re actually feeling is met with “We’re all tired, deal with it.” you eventually learn to just bite your tongue (and if you’re taking meds that cause epic neuropathy especially to the face, chances are you will -actually- bite your tongue at least a couple times unintentionally!).
I’m thankful for my primary care doc. She has been with me for 12 years. She was the one that finally got me in to the right people for diagnostics after 3 years of being told I was a crazy teenager making things up for attention (Yes, I CHOSE to miss the very last semester of my senior year in order to deal with blackouts and spinal taps and have to go back for an extra semester when I was able. Just what every teen dreams of!). She has been in my corner and understands my strange ranty speeches explaining my symptoms (apparently “burny fire ant bitey feeling” and “you know how blacksmiths bang shit on an anvil and you can feel it all the way to your core on the reverb?” are not standard medical descriptions. WHO KNEW?!) After trying in vain for the past 8 months to ignore growing mobility concerns and a major pain increase, she finally booked me a double appointment and we used it to make all the necessary referrals and work through my brain fog to make sure everything was covered.
My illness isn’t really invisible; on my worst days I rely on a walker with a seat, for a little over a year, at a specialists recommendation, I have been researching the ins and outs of service dogs, and those that know me can see it on my face and in my eyes when I’m at my breaking point. It’s been 15 years and I’m just learning how to ask for help. I’m just now realizing that I’m -not- invisible.
I’m still not sure how I feel about that.