In the old movie Broadcast News, the Holly Hunter character, I forget her name, would take time for herself every morning to cry. She just cried. There was no apparent trigger, no reason or justification ever given for why this intelligent, intense, professional woman would give herself a few minutes every day to weep. Then, after a few minutes of uncensored tears, she wiped herself off, sighed and got back to her day.
This is what I thought of recently as I cried in my bedroom, one hand gripping my dresser and the other holding onto a tissue. This was a scene repeated everyday for a good week and I was beginning to get concerned. Why was I crying? This was weird. Not like me. Something was wrong!
Does It Matter If I Cry?
On the other hand, dId it matter? Wasn’t just being in this world right now enough to bring on tears? Anyone else angry and sad and horrified at the same time? Honest to god, who isn’t?
I don’t know what else to say other than I want to be this pillar of strength but I’m not. I want to be the wisest of the wise and give deep, calming advice, but that’s not me right now. I want people to see me as the All-Knowing Doctor. I’m afraid that if people knew what was really going on they would abandon me for a much more stable role-model like Reese Witherspoon. I wouldn’t blame them at all, not one bit.
Back in March, in the Before COVID Times, I was so happy with how everything was going. All the clinicians in the practice at Explore What’s Next were thriving, doing great work with their clients. New professionals joined the practice. The yoga classes at the Studio were filling up which was so exciting. Workshops were lined up for our Speakers Series. It was all coming together after two years of planning and recruiting and implementing. Then the virus came.
For three solid weeks it felt like I worked day and night. All business owners in Western New York were in the same boat. Keeping ahead of the closures, the rules coming down from the Wizard of Albany, assisting all the EWN clinicians transition from in-office work to at home video-sessions. It was brutal but we got through it together. That made me proud and that felt good. I was impressed with the resiliency of our team of clinicians, with the flexibility of our clients. I was on-my-knees grateful that we had a business that could use technology to provide our service.
Two weeks later I saw signs that I was having a relapse of the kidney disease that has chronically appeared in my life on and off since my 20s. You have got to be fucking kidding me. Who the hell has a relapse of a chronic illness in the middle of a pandemic?! To be more specific, who has Chronic Illness in the Time of COVID? Somehow I’m pretty sure I’m not the only one.
Six Years Without A Chronic Illness Relapse!
Six years without a relapse. That’s what I had. Six years prednisone free. In my lifetime, the longest stretch I ever had in remission. People would ask me if it was the stress of the pandemic that caused the relapse? Who knows? I doubt it though. During those healthy six years that I was in remission really stressful stuff happened and no relapse, so why now? I will never know.
What I did know was that I was sick. My kidneys had let me down and now I would have to go on super high doses of the medication I hate but can’t live without.
Living with chronic illness is about learning to live with the ebbs and flows of how the illness compromises our bodies, our mental health, and our lifestyle. The illness itself, in other words, is one thing. The treatment of that illness is another. If you have a chronic illness you know what I’m talking about. What we have to do to maintain any level of health can be so emotionally and physically draining that we will stop sometimes and ask ourselves in all seriousness, is working this hard to maintain any facsimile of “normal” life worth it?
Prednisone The Tyrant
Prednisone is a tyrant. A toxic, horrible, tyrant that messes with you psychologically and physically all the while mocking you. “Nyah nyah nyah nyah nyah nyah! You can’t do anything about it because you will be in pain, suffer damaging inflammation, and possibly die without me.” It’s got a point. God I hate that.
The good news is that my medical team got right on my relapse before the symptoms got bad and they understood my desperate hope to get off the medication as soon as possible. Then there’s a bunch of bad news.
The side effects of prednisone:
- Mood swings.
- Weight gain.
Chronic Illness in the Time of COVID
Being absurdly immunocompromised during a pandemic.
And that’s just the tip of the iceberg. I can’t tell you how many times I’ve apologized to my family for emotionally crashing and burning. Yes, I am self-aware but this drug doesn’t care. It just doesn’t care. My usual mode of work doesn’t work. I am always holding a firm rein on myself but when I’m on prednisone it becomes more like a white knuckled grip on a runaway horse.
I don’t know how to describe the feeling. I’ve tried a million times and I don’t ever think that I’m successful. It’s like being on speed, with a million ants crawling up your back, your heart beating hard against your sternum, not able to focus on a thought long enough to see it through or hold onto long enough to create a memory. Memory shot as a result. Pushing, pushing, pushing. Like everything is urgent. Joy is fleeting. Exhaustion is constant.
But my kidneys are working. I am “healthy” otherwise. I am lucky that way.
Even if it’s more slowly and deliberately, yes, mindfully, I can still do my work, so I do.
That doesn’t keep me from being hard on myself and sad and pitiful at the same time.
And I’m not alone. it seems like everyone in the world is feeling the same way because COVID.
What right do I have to complain or whine when the world is burning? Do we all have a right to whine? Is it whining when we are really, truly, righteously miserable?
I’m going to say no, it’s not whining. It’s a reality check. It’s like the entire country has a chronic illness right now.
When you live with chronic illness in the middle of a pandemic there is no room for the succor of denial. The “underlying condition” you hear so much about isn’t so underlying. It lies right on top of us, ever present, warning us like Glenn Close in Fatal Attraction. “I will NOT be IGNORED!”
We cannot even be tempted to “reopen”. There is no such thing as a mild case of COVID for us. Our immune systems are already compromised in some way either by our illness or the medication we have to take or both. COVID would be, no joke, a death sentence. So we have to say no to gatherings of any kind, find sanctuary in our homes and maybe a few safe places with a few safe people. I watch movies or TV shows with longing and nostalgia, as people so casually shake hands or hug in greeting, congregate shoulder to shoulder in restaurants or welcome just about anybody into their homes throwing caution to the winds.
Living in this alternate, bizarro, COVID universe is such a deep struggle. It’s like being underwater and constantly striving to reach the surface. Once in a while we break through only to be pulled down again.
That makes it that much more important to practice self-compassion while we acknowledge that the dark side does exist. In other words, we can be proud of ourselves for doing the hard thing, whatever your hard thing is, coping with chronic illness, caring and educating your children while working from home, keeping a small business afloat, maybe all three at the same time… We can be very proud of ourselves AND honest about how hard it is, how tired we are, how overwhelming it is to deal with the whole mess. So if you need to, stop and have a cry.
I really enjoyed this article . I also suffer from chronic illness. It’s been very difficult, I’m glad I’m not alone ❤️