Response required yesterday to a letter received today

We try, desperately, to meet and match deadlines set by the world. But, from work to leisure, time works differently for the broken. Our bodies’ needs outweigh our desires to keep up with a “normal” pace of life.

On the truly terrible days, I can’t function. I can’t leave my bed. Every micro-movement, even just laying still, causes agony that doubles down on the internal pain radiating from my nerves, muscles, and joints. Hell-level migraine days see me curled into a ball crying, vomiting, and losing my will to live. There are moments where my stomach refuses even water and leaves me panting on the floor of the bathroom from pain and incessant retching. When I can’t stand the pressure of cloth, water, or even air on my legs and feet without shuddering and the times where my hands radiate heat and my skin itches like I was dipped in stinging nettles… I become useless.

Depression, anxiety, obsessive compulsions, and so many more mental health issues are also inextricably involved with having chronic pain and diseases. How are we suppose to operate on a timeline set by non-sufferers when we can barely make it through some days? Where important deadlines are concerned, we can’t control the readiness of our mental, emotional, and physical states. 

No matter where in the world you live, you have come across the obstacle of strict deadlines in relation to your health. Maybe it has been from government agencies, hospitals, doctors, family, or work. Communications are sent your way with threats about complying with their timelines. Your benefits will stop! Your appointments will be canceled! Your value will diminish! Your help will disappear! The phrasing is always a mix of aggressive and cold. They remind you that you and your conditions do not matter to them. You are just a piece of paper, a number or name to be pulled through their systems with hooks that only they have the power to release. 

I don’t want this to sound conspiratorial. It isn’t a theory or comment on modernity or automation. I’m sure we all have plenty of opinions on those issues. My attention to the problem of deadlines has heightened ever since my body became my boss. Every day I seem to be fighting other people’s versions of time.

Recently, I had to cancel a procedure the night before because I came down with the flu. The doctor would not have been able to preform the procedure and I would have made everyone else sick in the clinic. So, cancelling was my only option. I had paid for it ahead of time and had been a patient of the clinic for many years. The procedure was also part 2 of a 4-part series. This meant that I was already scheduled for the next appointment and had plenty of time between dates. The clinic knew my medical history and dealt with mostly intractable pain patients. They are constantly handling people with unpredictable bodies. The procedure was scheduled for first thing Monday morning. I left a voicemail with the office on Sunday night apologizing for the need to cancel. I even set my alarm and called again an hour before the appointment on Monday to leave a follow-up apology and confirmation of my cancelation. Thirty minutes after my appointment time, they called me. I was sleeping and it went to voicemail. When I checked later, it was a terse message from a nurse asking where I was and if I was still planning on showing up. Two days later, I received a letter in the mail. Now, this is a letter I’ve gotten many times before from various doctors and clinics. It’s a novel method of communication used to shame and scold patients who have to cancel outside of the required 24-hour notice window. The letter told me that my patient-hood was on notice. Canceling or not showing for an appointment was an offence and if it happened again, I would not be welcomed back. 

It didn’t matter that I had called and canceled at my earliest availability. It didn’t matter that the clinic is part of a major hospital and all communication goes through a central phone system instead of to the clinic directly. It didn’t mater that my years of being a patient and thousands of dollars spent annually would continue. It didn’t matter that the doctor had no say in the letter and that it is all handled by automated systems. It didn’t matter that their doctors can call out sick, be hours late, or miss an appointment due to an “emergency” at any time. It didn’t matter that I, and most of their patients, can’t predict our symptoms and illnesses. In their eyes, I had acted against policy and deserved punishment.

Every year I fill out forms, get doctors notes, and do phone interviews with faceless voices reading over checklists in order to obtain low-cost health insurance. It’s a hassle and can often feel as though I’m pleading with illogical forces to understand the state of my medical and financial needs. 

When various agencies gather this information, they mainly communicate via postal mail. There is a different agency for every part of the process and none of those groups communicate with one another. They also don’t know what is going on at the other agencies nor do they know how to assist with any questions outside of their tiny boxes. They send a lot of mail and have a lot of unintelligible rules. You have to wait to hear from each department, read every letter carefully, and answer any questions the best you can. Often the information doesn’t make any sense. 

Most importantly, you MUST obey their insane deadlines. For example, I received a letter on a Friday afternoon and was told that my medical insurance would be terminated if I did not complete an interview by that Monday. There was no online option for the interview. There was a phone number that is active Monday through Friday 8am-3pm or an appointment could be made (how?!) to visit the local office to complete the request. Anyone who deals with these agencies knows the near impossible task of getting a human on the phone. I have been put in the queue for 90 minutes for the initial pick up only to follow that with 4 additional hours of holds and transfers before getting to someone who could help me. This has happened multiple times. I also avoid their local offices at all costs since they operate in their own timeline where waits are hours long, people are never seen, and they decide to close indiscriminately throughout the week. 

I was able to fulfill their request this time, but what if I had been too sick to handle the call. Or too incapacitated to read the mail and gather the needed documents. My health insurance would have been taken away.

Notes from employers and friends follow the same theme, just with softer words. The world is full of people and places that require future assurances to be made today. Saying yes to an upcoming event or promising to speak at a conference is the way our society operates. People don’t realize that the ability to honor those commitments is out of our (the wacky-bodied) control. We want to participate in activities but our bodies dictate our reality. And sometimes, a lot of the time, my body is a real party pooper.

I’m at the point where I hesitate to say yes to any future event. I’ve had to back out of weddings, birthdays, flights, phone calls, doctor appointments, meetings, etc. at the last minute. I end up feeling terrible about the perceived “flake” and my reasons can come across as excuses to those affected. These cancelations have cost me time, work, money, and different types of relationships. I now qualify every yes with “if I’m feeling okay”. My okay is so different than other people’s okay that it doesn’t really help. It does mitigate a small portion of the guilt and anger I feel for not being able to follow through. I also go overboard with my apologies, gifts, work, favors, and such to show my appreciation for their understanding.

Organizations and businesses, especially governmental and medical, usually don’t accept an addendum to commitments. Follow their rules or else! I don’t agree with that attitude and I don’t think it needs to exist for a group to function effectively. There are exceptions to the rule and new ways of operating should always be considered. From grace periods to malleable scheduling, there are ways for both parties to succeed in maintaining a partnership/clientship/patientship. Treating people like the wonderfully complicated individuals they are is the only way to ensure loyalty and satisfaction.

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