Sadly, the administrative detritus of chronic illness is a full-time job itself.
Much like the day-to-day of a career, cancer life has its own rounds of meetings, education, projects, busy work, and aggravations.
This experience is the most stressful project management job I've ever been assigned. It's life-or-death (mine), the project manager (me) has about 30% or less capacity, the environment is filled with medical and financial landmines, and the list of unknown risks is long.
Because I am a control enthusiast, I currently have my administrative activities broken down into the following categories:
- Medical appointments - This includes any tests and scans I need in preparation for my currently bi-monthly oncology appointments. I also should, sometime soon, start re-incorporating things I have neglected. The dentist comes to mind...
- Research - Thankfully the research around treatments for Mantle Cell Lymphoma is evolving quickly and the Standard of Care is following suit. Research also includes finding resources that can help me (and others) as I move through the journey. I may not need them right now, but having these resources where I can find them helps me feel better.
- Billing and Insurance - Medical billing and insurance in the US is a show (understatement). Even trying to keep track of what you have paid, what you still owe, how close you are to the deductable and out-of-pocket maximums, and whether you have more bills coming is next to impossible. One hospital stay triggers bills from 4+ different medical providers, many of whom you have never met. This sub-category also includes the annual benefits sign-up and review. Having a severe chronic illness means careful combing through all of the health insurance information + more phone calls to ensure that my needs are still covered. I can't blithely assume that purchasing the "same insurance" means the same coverage.
- Disability and Income - Right now, I receive Social Security Disability and Long-Term Disability. This is my income, and this safety net allows me to focus on my healing while still paying my bills. I also stick taxes in this category. For Long-Term Disability, I have quarterly paperwork and conversations with the insurer so they can ensure I'm still sick or nudge me off their program. Taxes are annual.
- Estate Planning - I'm in my 50s, so I am at an age where I started thinking about end-of-life concerns - but the past year required me to escalate that work. I have my wills, advanced directives, and accounts at a point where estate planning is now maintenance. At some point this year, I need to write out a "I've died, here's where everything is at" document for my partner and stick that with the will. He's got a good idea where everything is, but having it all written down for reference will help. My goal is to reduce the stress and drama as much as possible.
As with any job, the workload is going to expand and contract based on circumstances.
Sadly, this type of administration expands when you least have the energy for it. Hospitalization, treatments, etc. all trigger bills, paperwork, payment tracking, and multiple phone calls.
Right now, my health has improved such that the administrative load around appointments, billing, and insurance has become less onerous. I took care of most of my estate planning prior to diagnosis, so that's a big task I don't have to tackle beyond small updates.
My goal for this year is to simplify my administrative systems enough such that I can easily hand things off to my partner and he has everything he needs to take care of things when I can't.
My hope is that we won't need to do this handoff anytime soon.