The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.
My daughter’s voice woke me this morning. I open my eyes. I take a deep breath savoring the moment before the pain of the day began. My daughter is typically in preschool, but due to social isolation requirements, she is home, as is my nine-year-old and 17-year-old. My husband’s spot on the bed is vacant. He’s working from home and gets up before dawn to begin his day.
I am on duty with the kids, taking care of breakfast, homeschooling, and intervening in sibling squabbles until about 10 AM when my teenager takes over for two hours so I can squeeze in some freelance work. My husband and I are fortunate: we can both work remotely and have a teenager who’s willing to help out. Many people isolated at home during the COVID-19 outbreak aren’t as lucky.
But, this pandemic and the resulting isolation means that some people with chronic pain are dealing with more in their daily lives than they have the stamina to handle. I’ve developed strategies for pain management, but now I’m running a homeschool instead of focusing on pain reduction.
I wince as my feet hit the ground, and pain shoots up my legs. I hoped that the hot bath the night before, and the massage from my husband would help some, but, after days of full-time childcare, the inflammation in my joints is relentless.
My daughter wants me to carry her, but I know my knees can’t handle the extra weight, so I encourage her to snuggle on the couch instead. When I sit, the pain in my hip moves from a dull throb to a searing burning, then, my knees revolt at being bent at 90 degrees. I’m sitting on the couch, trying to read a book to my daughter. My wrists are screaming from the weight of the book, and the pain keeps taking my breath away, so the story comes out in spurts.
We are adapted to isolation
I spoke with Fibromyalgia warrior and freelance writer, Anne Hartt, about how social distancing has affected her, and how she feels well-prepared for the weeks ahead. Anne, like many chronic pain sufferers, live their lives in a way that already mimics the social isolation the rest of the country is undertaking. Working from home is in our wheelhouse. We are used to canceling plans and spending days at home with limited social contact.
We are also adept at dealing with unknowns in the medical community, and have already learned that doctors don’t have all the answers. We are uniquely qualified to deal with this pandemic, but that doesn’t make it easy.
Chronic pain affects 50 million people in the United States alone. Chronic pain sufferers experience increased risks of anxiety, depression, and an overall reduction in their quality of life. Humans are a social species, and lack of socialization can negatively impact those who are already more susceptible.
Isolation can mean increased pain
Many chronic pain sufferers experience an increase in pain levels correlated to higher stress and anxiety levels. As this horrible illness is sweeping the globe, anxiety levels are rising, increasing insomnia and pain levels. This cyclical relationship is undoubtedly real for Hartt and me.
Social distancing and the closing of services have thrown a wrench to all the mechanisms many pain sufferers use to control the pain and fatigue. Social distancing mandates have eliminated things like acupuncture, massage, exercise services, and counseling services. While people with chronic pain adapt to staying at home for even longer periods, the removal of some of the supports we rely on means that we are in pain while trying to manage more during the day than we were before.
Chronic illness and immunosuppression
On top of the pain, many with chronic conditions have a suppressed immune system so, even more than the average person, they need to be mindful of social distancing at this time. I can’t allow my children to play with the neighbors, and playdates are off the table.
Hartt recommends chatting with groups of friends via video call or group texts to deal with social isolation. She also finds solace in brief outdoor breaks, which are safe as long as we all maintain distance from one another. Even a walk around your own home for ten minutes can be rejuvenating.
Support is available remotely
The US Pain Foundation offers in-person support groups so people with chronic pain can feel heard, understood, and even to help connect them with resources for managing their condition. The foundation canceled these support groups because of the coronavirus outbreak. Luckily, there are still call-in support groups available.
Self-care is the key
For right now, I’m trying to accept the increase in my base pain level. There isn’t anything I can do about my children being out of school, or my inability to go to my gym or physical therapy sessions. Hartt offers solutions for pain relief such as heated blankets, moving every thirty minutes, taking extra baths, meditation, and journaling. Self-care is even more critical at this time, especially for the chronically ill.
As Hartt says, when you are adjusting to life with chronic illness, “You grieve all the things you were, and all the things you lost, it’s hell!” She reminds us: trying to focus on gratitude and what we have, instead of what we’ve lost, is good advice for everyone who is struggling with social distancing.