Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient.
Here’s the thing, I’m not sure that I want to have a perfect schedule and exact history of my diseases. I have approximations, ideas, sporadic notes, and well-intentioned guesses alongside crystal clear bad days and dramatic episodes. There are certainly dates and times logged in hospitals and doctor’s offices. I could spend my time, effort, and money collecting all my medical records. Let’s see, I would need to call, email, probably fax, send snail-mail, and visit miscellaneous providers across the world. Once all of that paperwork is compiled, I would have to go through each file and construct the chronological timeline. I would also have to check for mistakes (as they are frequently found in records) and make allowances for the many visits and doctors I cannot recall. There is also the important and impossible process of remembering when I experienced problems that I did not seek help for and knowing when certain symptoms started before the actual medical interventions.
It’s an exhausting and ridiculous process. I’ve tried my absolute hardest to compile a complete medical record. I have received a number of files and spent time writing a detailed history, to the best of my ability. But I know it’s a fruitless endeavor. There are incorrect memories and wrong dates peppering my history. Important moments slipped from my brain and insignificant ones have ballooned in their place. The thing is, this organizational shortcoming and not knowing exactitudes around my illness’s history isn’t rare or bad.
A combination of survival instincts and emotional coping mechanisms keep us from holding our pain too precisely. Reliving difficult physical experiences through a haze is preferable to clear loud memories of each traumatic event. I’m not even counting the brain fog! Time generally looses its meaning for the chronically ill. Or maybe I should say that the meaning of time changes. When your average day is filled with avoiding triggers and storing up enough energy to get through brushing your teeth, time looks more like day and night. Sometimes, that type of time doesn’t even register if you’re in a terrible flare or hospitalized. At that point, time becomes space: in my house or out of my house. There are many other versions of time depending on what is happening. It’s all very tricky and fluid.
Unfortunately, the reality of our uncertainty can leave non-sufferers confused and even accusatory. They can’t fathom that our lives are complicated to a point of breaths being more important than days. I get it. When your reality doesn’t match up with someone else’s, a little short-circuiting happens and that person can choose to proceed with empathy or frustration. The latter is often what the invisibly ill hear. We hear it from the media, doctor’s office, social circles, and complete strangers. Of course, there are frauds, attention seekers, and even those with mental disorders who wear chronic diseases like coats to be discarded after the season has passed. But shouldn’t we err on the side of compassion? We, whether it’s someone on the other side of the world or a next-door neighbor, don’t know their struggle. Unless harm is occurring, we all need to be a little gentler with each other’s journey.
I have decided that I am not going to stress out about my timeline. Between being my own medical advocate and digging for the ‘why’ behind my conditions, making it through each day is hard enough. My diseases are mostly invisible and I will always have to defend the way that I am feeling. I can’t carry around my test results and doctor’s notes to prove to people that I am in pain. Nor should I! It started, it went, and it is still going… that’s all they generally need to know. I’m going to keep track of time when I need to or if it makes me feel better. I have to remember not to give myself the extra job of evidencing my medical problems to everyone. I’ll always handle my physical issues in a way that best suits me, not them.