From the outside looking in, interpersonal interactions of someone with a chronic illness or pain can look a bit unpredictable. Canceled plans at a moment’s notice, stretches of non-communication, sudden shifts in functionality, dazing out while you’re talking, or repeating their stories. While we often talk about the underlying cause being the illness, what does it look like from the inside? How does have chronic illness find itself being expressed in our relationships?
When Communication Looks Irregular
As I’ve personally had a recent flare of significant pain, the messages of a few friends have brought to my attention that it can be a bit confusing from the other side. They see me sharing a video on Facebook but not respond to their private message or answer a text. Or knowing that I’ve gone to work yet I’ve not picked up the phone. There is, of course, an explanation and I’ll try my best to illustrate it.
All communication is taxing, but in varying degrees and in different ways. Sometimes, there are also ways to work around some of it and appear better than how we’re actually doing.
Autopilot in People
“Being on autopilot” is a term I’ve used for a long time now in trying to explain how I can work and I seem fine. I’m sure many of have experienced something like it. Instead of remembering a phone number you remember what order you pushed buttons in. You don’t remember a lock number, but find that as soon as you do it, the memory takes over and you punch it in. You can’t give someone directions, but you know how to get to a certain location because you’ve been there so many times. It’s a form of muscle memory, where you do a task to often that you no longer have to think about it…you just do it.
Interacting with people can be very similar, especially in a work situation. People come in, the greeting is always the same. They often ask the same questions I’ve heard for the past 10 years that the answer is automatic. On good days, I’m alert and completely aware and can have a really engaging conversation. On days like recently where there’s significant pain constantly that makes it hard to concentrate? Most visitors feel like I’m aware and alert and having an engaging conversation because of that muscle memory. I don’t have to think about the smile, it comes when I’m there answering a common question because that’s what I’m supposed to be doing. There have been occasions where I feel like I’m half in a dream world because I can feel and hear myself responding but all my conscious mind is doing is wondering what time it is so I can get off my foot or change a dressing and be far away from any light source. Though I’m grateful for the ability, it can be very surreal and distressing in the moment.
I’ve done things like take out the trash and cleaned without realizing it because it was just part of the daily routine that my brain had stored away “this is what needs done”. The hard part is that is that for others watching, it seems like I’m just a tiny bit off because I appear pretty functional, maybe just a bit weird.
Friends Aren’t Autopilot Material
There’s a lot in life that can’t be put on autopilot though. Anyone I’m close to? Those aren’t a dull, everyday interaction. There’s engaging conversation on a wide variety of topics that you need to be a willing participant in. So while I can have what seems like a productive day at work, knowing that a friend is calling can present more of a challenge than I’m able to take on at the moment.
Sounds a bit weird, I know. Friends are the ones that are supposed to be your support network and the ones you can be yourself around. Problem is, on bad days, we’re not even ourselves. I’m not just grumpy or feeling a bit anti-social, I literally cannot give them the attention needed to interact. We had a friend over for dinner recently and there were several occasions where I have no idea what they were saying. It was such a taxing thing, trying to listen, that my brain just kind of shut off and I stared off into space in the middle of the conversation. I couldn’t even focus on words to say aside from being able to mumble “Sorry, pain” and just cuddled in a blanket on the couch. A part of me could see that they were frustrated, but the rest of me couldn’t even figure out words to speak and it just frustrated and upset me more…making everything in my own head feel worse.
When The Streams Cross
This leads into one of the possible reasons we seem to cancel plans last minute. Sometimes, autopilot can seem to take over when we’re on the edge of being not okay, so that when someone asks “Hey, you want to come to the movies with me tonight?” your automatic response is “Sure!”. Not because you’re just agreeable, but because you like to hang out with those close to you and a part of you really does want to go. You’re not thinking in the moment “Oh, but it’s slightly hard for me to think about complicated things and I may get worse over the next hour. I may want to reschedule”, you’re thinking “Awesome! Let’s go!”.
Now, on bad days, they can hit quickly or slowly, but either way, you find yourself unable to complete a task and it takes an inordinate amount of brain power to figure out what to do. Simple tasks become as complicated as doing complex algebra…while drunk…and high…and on a sedative…while dizzy. I have been in tears because I couldn’t understand how to cancel plans with someone. Not because I was scared I was going to upset them, but because I just couldn’t figure it out. Do I call? Where’s their number? Do I text? Can’t…think…words.
Over the years I’ve learned how to cope with this and work through it as best I can, but that took a lot of experience and a truck load of stubborn ambition. Despite that, there’s just days where I can’t people. My brain is so overwhelmed, I can’t have a conversation. It’s just not going to work no matter what I do or what meds I do or don’t take. So by the time I can figure out or recognize that I need to cancel plans, it can be right as someone pulls up to pick me up. It’s not intentional, and I can promise that I hate it more than anyone I’ve had to cancel on.
Like A Ton of Bricks
One of the other reasons that we seem to be unpredictable is that…well…we are! I can be having the best day, fantastic work day, be getting ready to go without a care in the world. Then, I pull my hip or my knee or my ankle putting on my shoe. (Yes, seriously something that basic. I’ve jarred my ankle, slipped my hip, and subluxed my knee putting shoes on) There’s no choice but to cancel. It’s not like I decided to do gymnastics so I intentionally injured myself so I can get out of participating. But the pain has hit and the injury needs attention unless I want to be completely nonfunctional for the rest of the week.
Recently, I’ll be having a decent day and all it takes is stepping on my braced ankle the wrong way and I’m down for the rest of the evening. At this point, I know that either I can still go and be restricted and miserable and just want to go home the whole time, or I can cancel plans and take care of myself like I need to. So while it may be frustrating on the outside looking in…just imagine being in the other side of that.
We’re Not Avoiding You, We’re Avoiding Pain
So with all of that, please try and understand that while it seems like there’s no logic or pattern to what we’re doing. It may be confusing that we call and talk one week and then we disappear to the point you consider putting our face on a milk carton. We’re not being terrible friends intentionally. We probably feel MORE isolated than our seemingly odd behavior makes our loved ones feel. But for us, it’s like being held hostage by your body sometimes. You never know if it’s going to let you out and enjoy the fresh air for the day, or lock you in isolation without warning.
We’re not trying to push you away, we’re trying to survive and sometimes it’s just a bit difficult. We still love our friends, and we still need them. We just also just ask for a bit of understanding of what this personal prison is like while we’re trying to do it.
