Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.

Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.