Have you noticed how big chunks of time, weeks and even months, become a blur because of chronic illness? It’s easy to see how living with pain, severe fatigue or body parts that don’t work is draining. Even healthy people can understand that.
But there’s another aspect of living this life that gets overlooked and that’s just as high impact. I’m referring to the time that’s eaten up by health care appointments, tests and treatment. Just like your bad health, time spent this way wears you down. Worse, it increases the sense that your life is out of control.
Last August, I fell. Although I tried to limit the diagnostic tests and appointments, doctor’s appointments, x rays and MRI’s became a necessity. Broken ribs, rotator cuff tears and a slightly fractured elbow.
These breaks created a lot of pain and limited what I could do. Diagnosis and treatment was complicated — and required more appointments and tests — because my multiple sclerosis nervous system goes haywire with pain.
The next month, increasing blurriness in my left eye was diagnosed as extraordinarily high pressure (glaucoma) with Posner-Scholssman cornea syndrome.
I know this sounds sounds like a lot. But the funny thing is that looking back on the past four months, it was the time spent in diagnostic tests, medical appointments and treatments that really rocked my balance. I’ve developed mental tools that allow me to continue living my life when I have to integrate new body problems.
But facing how little influence I had over time spent traveling, waiting and seeing doctors or taking tests would make me boil. I had to block off an entire half day of work for a 15 minute medical appointment or risk missing client calls or other work commitments. Over the past four months, I’ve spent about 60 hours in doctors offices, having tests and getting treatment for just these two issues.
When I complained about this to my husband, he said, “You couldn’t possibly have a job with this schedule.” He didn’t mean it to be a momentous statement but it really sank in. What he meant to say is, “You wouldn’t be able to do this if you had an employer.” And that’s when I saw how my frustration must be so much greater for anyone who is employed.
I’m not trashing or blaming doctors or any one part of the health care system. I don’t have any ideas how to improve this.
But we, patients, owe it to ourselves to at the least recognize this aspect of living with illness. The time spent managing our health places a greater burden on an already over-taxed situation. We need to be aware of this because it impacts our relationships and our performance. Just as much as our taxed bodies.
What about you? How do you manage work and frequent health care appointments? Do you collide with competing needs, find yourself stretching the truth or outright lying? Have you given up altogether and quit? These are all responses. Which one is yours?