Written by Kylie M. Steinhilber
A few months prior to February, I had re-started physical therapy (PT) and was going twice per week. I say "re-started" because I've been in PT a long time on and off for several reasons. This round of PT really focused on neck, mid-back, and rib pain that was persistent for the last year or so. The issues I had been working on in had kind of reached a halt in progress. I had made improvements in my range of motion, my strength, my pain became less severe over time and "bad days" were rare and then I began maintaining those gains more consistently.
I remember February 14th. I had a meeting with some colleagues and my dissertation committee that afternoon before heading to a Valentine's dinner with my partner. On my way home from the meeting, I had a cough and before dinner, I was feeling extremely nauseous but pushed through. The nausea became worse to the point I couldn't even finish my chicken parmesan. And, let me be clear -- I would eat chicken parmesan every day of my life, that's how much I love it. This was the start of a bad bout of the flu and pneumonia... (no, not COVID-19... at least to my knowledge...)
It took me about two weeks to recover to the point that I could begin work, school and PT again. Those two weeks off were like hell to my body - not only the illness itself but not being able to move my body started to cause my gains to slip away. To fully recover from the left over aches and pains, it took a month or so, and my ribs continued to ache which every movement. Even sitting for classes or for dinner felt like a strain. I was unable to jump back to PT the way I wanted to, and it took several more weeks to re-gain what strength and progress I had lost due to pneumonia. About as soon as I recovered, I started to hear about COVID more seriously on the news...
March, 2020
My birthday is March 2nd. My birthday celebration was the last time I really remember gathering with people, without worrying if we'd catch something, or cause someone harm. It's a very pivotal moment in my memory etched in with all of the positive close connections I have with people in my life. About a week or so later, we began hearing news that our university may go virtual. Our spring break was then extended and we fully converted to a life isolated at home. I am lucky and privileged enough to have the space to work from home with my partner. For all of this, I am very thankful. At same time, I am very disgruntled by the challenges this had on me, my body, my mental health, and just general wellbeing.
April, 2020
With my graduate classes, my clinical rotation, and my friendships were all transitioned online, the only opportunity I had to leave the house was PT. Little did I know how much I really valued that. I already knew PT was amazing because I had finally found a physical therapist who I felt could understand me and my needs without even needing to ask me. Plus I had a team of people I trusted who collectively supported me at the site. I already knew I benefitted from the accountability built into PT to practice your exercises. I already knew that I physically benefitted from the care. What I really shocked me is how much I needed these people in my life to cope with my pain not just physically, but psychologically. I also largely underestimated how much my freedom meant to me, and how much privilege I had in my access to this care.
Around mid-April, my insurance decided it wasn't going to cover any more sessions. (Actually, it said it wouldn't cover any of my prior session from March but we fought that). On one hand, I agreed - I had finally achieved how well I was doing in February. I think there were some things I could have continued to improve, but it wasn't dire. On the other hand, my insides I felt like:
"Oh my god, how am I going to go on without this?"
"I can't lose my only chance to get out of the house!"
"Oh crap, I really have to do my at-home exercises..."
"Insurance sucks! They don't understand!"
"Is this really the best time to stop?"
I had a few more virtual check-in sessions with my PT and then.. I was on my own. Looking back now, a lot of the worries I had reflected the fact that this decision was not my own, but decided for me by insurance. I may have felt differently if I were more in control of this next step.
Time? What even is time? , 2020
Honestly, looking back at the beginning of stay at home orders, I can't believe how well I, and my body, handled it. I think my brain went into fight or flight mode and I suppressed all of my dooms-day feelings. Yes, I've had several bad days where my body feels like it's burning from the inside from my neck to toes. But, I can now cope with these days better than I would have before.
There are a few things I've learned from having chronic pain that have become especially more apparent because of COVID-19 and working from home.
I always feared my pain, thinking that there's only so much I could take an one day it'll be too much and I'll break down. This fear came to light when insurance discontinued my care unexpectedly at what seemed like the worst time ever! In reality, I was able to manage my pain better than I thought, making it more tolerable. (see point 6)
That being said -self-management is more important than ever! PT held me accountable. Once it was gone, I was now solely responsible for my exercises, my progress, and my mental health. I received a lot of support from my PT team that I now had to provide to myself. That being said, I've also recently discovered that it's okay if I need a team of supportive care staff to make managing pain easier! I've reached out to alternative care healers to find options for this support (also see point 8).
Working from home posed its own challenges for my pain. Going back to back to back on Zoom meant all of those breaks I naturally had in the day to walk building to building were gone. I could easily pass the day never leaving my desk or even standing up. I had to learn to set boundaries and ask for meetings to stop at the 50 minute mark. And honestly, you'd be surprised by how many other people actually felt the same! These boundaries have been important times for me to change positions, stretch, lay down, or walk around and have been vital to long-term success with my pain and with work.
I really took for granted how much my schedule pre-COVID-19 provided me with movement. I used to walk to the train 10 minutes each way and take breaks at work to walk downtown and window shop (self-care! see point 5). While working from home, it became apparent how much this movement actually benefitted my body. I definitely wasn't working out on purpose before COVID-19 hit, so not much has changed there. Instead, I've made it a point to intentionally make the most of the time I now have that isn't spent on commuting and use that towards movement. I try really hard to not judge myself for how little this movement may be - even if its just walking 5 minutes to the end of the block and back, or doing very gentle yoga. Every little bit helps (see point 8).
I also took for granted how much my past schedule was more attuned to self-care time. I saw a meme once that said something like "my hobbies are all restaurants and non-essential businesses" and that is so true about myself. These little times to go store-to-store window-shopping during my work breaks did a lot for my stress level. COVID-19 and working from home challenged me to find new self-care tactics that help to manage my stress, and therefore my pain. I also realized very quickly that I only found these new self-care strategies because I was reactive to my pain. If I had a bad pain day, then I'd cope with it. Instead, I've had to become more proactive in scheduling time for my own health and wellness to make up for what I was getting before. For example, I'd always call my mom to chat on the way to work but without the commute I've had to find a new method!
While fear is worse than the pain itself has been, the bad days are nevertheless still bad. But my thinking about these days has changed significantly. Without my care team to remind me that these days are becoming less frequent over the larger course of my pain experience, I now have to be that voice of reason in my own head. I can stop my thinking from "this will never end" and change it to something more helpful like "I have days where I feel worse than others, but my body has gotten me through a lot and always recovers in its own time." Even though it may feel relentless and never-ending, I know that is neither true nor helpful to think about.
I am a person who "stuffs" their pain (physical or emotional) and says "I'm fine" knowing I am not. COVID-19 oddly gave me a safe opportunity to practice radical authenticity. With everyone struggling behind the screens of Zoom, I've had more unabashed freedom to admit "you know, I'm not great" when asked "how are you?"Along with setting boundaries at work, I've been able to practice this with my supervisor. Perhaps, this is one benefit of being in the therapy industry! Not only have I noticed that people are thankful for my authenticity and openness, but it creates a better environment for connection and I walk away feeling more supported. I've also realized how important it is to clearly communicate my needs to others. Often times, this is simple saying no to projects - "Hey, I'm really overwhelmed by the amount of projects I've said yes to - I'll need to pass up this opportunity." At other times, it's asking for support in the ways I'm lacking - "Hey, do you mind if we go for a walk after-work and order dinner instead of cooking?"
Lastly, I've realized how much I judge my body. I judge my body for the pain its in - "my body hates me", I judge my body for the weight its gained in quarantine "ugh I'm so fat", I judge my body for its inability " I can't believe I can't even run a mile!" What I've realized is that its not worth my time! There are so many other things that are more valuable to me. Does that mean I'll stop having these thoughts? No. But it does mean I can better challenge them. I've had to work towards acceptance that my body has changed and has new challenges that I didn't have several years ago before my pain started, or even months ago before COVID-19. I can accept these changes are totally normal and still respect my body for what it has done for me.
If you've gotten this far, thank you. Whether or not you have chronic pain, I hope there are ways in which this resonates with you.
"The best view comes after the hardest climb."