It has been almost three years – three years on May 28th to be precise – three years since my car spun and flipped causing spinal damage, along with chronic muscle and nerve pain. Three long, painful, exhausting years of being bounced from one doctor to another, referred to one health professional then the next, scans, interviews, reports… more reports than I can even remember.
I am tired. Physically and mentally exhausted, and sick of the process of going from one person to the next. The thing I’ve also noticed is that those you know start make judgements for the amount of appointments that fill your diary. Most don’t say anything, but the shift in atmosphere when I mention my plans for the week is palatable, the knowing looks, the sighs, the veiled comments about “attention” – it makes me feel helpless and hurt, exhausted and worthless.
Several months ago I called my insurance company asking if I could stop treatment for now and resume it in future, I explained that I was not getting better and that it was causing me a great deal of emotional distress to keep running in circles with no improvement. The claims officer was unsympathetic and horrible; she informed me in a very unkind and rude way that that I could stop treatment if I wanted but would likely not be approved for any claims in the future. I ended up being so upset that by the end of the conversation I was sobbing and struggling to get words out. No one would ever choose to deal with insurance companies and these endless appointments for attention. It is only a matter of desperation that would cause a person to put themselves through this.
I have appointment fatigue – exhaustion from swimming in the “Sea of Never Ending Medical Professionals.” These people have all been kind to me, but ultimately they work for someone else – the insurance company that pays my bills. I am not their priority.
I am a number on a patient file, someone to be examined and then reported on, someone whose treatment is restricted by the limits imposed on them by my insurance.
Surviving chronic pain has become my job. Trying to keep a sense of humor and not let it change my personality is difficult, but something that I work on each and every day. I do not want to be “The Girl with The Pain,” so I have learned to smile and function even when my body is screaming, it is only occasionally that I let those outside my household see the agony that has me laying on the floor silently weeping several nights a week.
Living a semi-normal life when you are unwell takes all your energy, but being an unwell person who is sensitive to all the medications that are meant to help you is even worse.
There is nothing I can take to ease this incessant pain, not even over the counter painkillers. Eventually the pain builds to the point where every joint and nerve in my body is hypersensitive, and I do not sleep. Attending appointments deplete me. Driving over an hour to the city, sitting in stuffy waiting rooms, trying to make my foggy brain remember and then explain my symptoms and pain to medical professionals, appearing smiling and functioning – it’s all exhausting. Arriving at the conclusion that it is pointless and knowing you are stuck in the cycle anyway – exhausting. I have appointment fatigue. I have chronic pain. And I don’t know when either will stop.