Not a therapist’s couch, MY couch
I have a chronic auto-inflammatory condition that affects the lining of my heart (pericarditis). Doctors who are experts in the condition agree most cases like mine derive from mild viral infections, that may even be asymptomatic during the infection but can deliver debilitating effects years later.
I’ve had pericarditis for more than ten years, but it knocked me back so hard in 2018 I was pretty much worthless. I suffered from shortness of breath, constant chest pain, and a heart rate that was uncontrollably high with any activity — like talking, eating, or walking to the bathroom.
My couch and I became very well acquainted.
I am better now, but it occurred to me that lessons learned during my year in limbo might be helpful to others — perhaps now more than ever. So here’s what I learned.
We all need a bubble where we feel safe
Whether it’s your couch, your workspace, your car, or just your six feet of social distance, there is a spot where you need to be. Everything beyond that triggers twinges of anxiety. And that’s okay. It does not matter what is at the root of your need for space, it’s perfectly normal to retreat into it whenever you want to.
Slow-motion is better than no motion
There were certainly times during my year on the couch that I felt like a slob with zero forward momentum in my life. Hell, momentum wasn’t even in my vocabulary for twelve months. But looking back, I see that my forced slowdown was exactly what I needed to survive, and not just physically. It was a mental sabbatical that I actually needed. I came off the couch with renewed purpose and a clearer understanding of what I wanted to do for the rest of my life.
The only way to move forward is one step at a time
My physical limitations were extreme. There were times when I became overwhelmed by the distance between the couch and my bed. It requires effort to stop looking at the endpoints of our lives. I am very goals oriented and have been known to spend hours planning and tracking and calculating how to reach them. All of that ground to a halt for me in 2018. The fact that putting one foot in front of the other was a challenge altered my way of looking at life. The plans I make now are more likely to be very short-term, with lots of baby steps included in the plan. And I almost never waste today looking too far beyond tomorrow.
We are stronger than we think we are
I learned strength is far more than physical. The mental capacity we each have to keep pushing through a tough time is something I think we underestimate in ourselves. I have led a charmed life. I’ve barely been scuffed up by life events, so my mental strength was a bit untested when I landed on the couch. Guess what? It showed up without me even trying. Day after day I found the strength to push through the pain, the disaster that is our healthcare system, and the fear that I might not bounce back from this.
Television is overrated
I’ve got to laugh at the memes about people watching Netflix until “there’s nothing left.” I get that. I love binging a good TV series as much as the next person, but there’s only so much you can watch without it becoming a blur and your brain turning to Malt-o-meal.
There’s a crap ton of good cheap digital fiction out there
I read and write primarily non-fiction. Prior to my year on the couch, I had probably not read more than twelve fiction books in the same calendar year since, I don’t know, 1968 maybe. Goodreads says I read 68 books in 2018. Most of them fiction, and the vast majority of them were entertaining.
Want to know my secret for binging good reading? Just like on television, I read series. If a book says it is “Number 7 in the John Doe Crime Series,” count me in for at least a sneak peek because if I like what that author is putting on the page, it’s a guarantee of six books I will enjoy. I shop the major online book retailers, but I also keep an eye on platforms like Medium for good fiction that might otherwise get lost amid the big-name authors on Amazon.
There’s a support group online for just about everything
This is not an ad for Facebook, but if you’ve got a disease, disfunction, hobby, business, or lifestyle, there are people on Facebook you can talk to about it. As obscure as pericarditis is, I found my people. And it helps. Support groups work by providing information as well as an opportunity to share your own experience in a place that feels safe because these people know what you are talking about. It also serves as a mood booster when you can return the favor by offering advice to other members of the group.
Meditation is way harder than exercise but just as valuable
My condition made exercise impossible, but at the urge of members of my online support group I took up meditation. It is hard to calm the mind. I found guided meditation apps are a big help. I feel like my mental health improved dramatically with continued practice.
There are plenty of good doctors, but great doctors are in very short supply
One of the most important things I learned from my couch was that finding the correct doctor can mean the difference between getting off the damn couch and spending the rest of your life there. We tend to be too trusting of the first doctor we see. We see them when we are at our worst, so any help they offer can feel like an improvement. We want to be grateful. We want to accept what they tell us as fact. Unfortunately, that is not always the case.
There is no substitute for self-advocacy
I got off my couch by advocating for myself. I educated myself about my condition. I took my time. I prepared myself mentally. And I refused to accept answers from professionals who lacked both knowledge and empathy. I worked hard to find a doctor with both.
I happen to have a very dear friend dealing with a medical crisis right now that was originally glossed over and ignored by his primary care doctor. Had he not pushed for clearer answers and a second opinion, and now a third and fourth, his condition may have gone completely untreated until it was too late. You are always your own best advocate.
I don’t wish a couch year on anybody, but if you find yourself immobilized at some point, my advice is to figure out what you need and are capable of. Accept help from those offering it, find your mental strength, and learn to live in this moment, whatever it looks like.