COVID CHRONICLES Day 25
Living with Chronic Illness During a Pandemic
Tuesday, April 14
Another night of less than optimal sleep. Woke up tired after seven hours. Lisa went to sleep later but slept later and is doing better spirit-wise. But she’s not feeling very well physically again today. She’s concerned about feeling some shortness of breath, while understanding that everyone in the house is suffering today from the pollen count.
I’ve referred to Lisa’s migraines. She’s struggled with this neurological maelstrom for more than 20 years and is incredibly informed about her condition. I knew some of what people living with migraine go through, but the learning curve feels steep when you’re trying to understand and support your partner. Lisa has really opened my eyes. The more I learn about migraines from observing and listening, the more compassion I have for the millions of sufferers.
My mother suffers from lupus and fibromyalgia. For years she has gone through periods of intense pain and also is susceptible to viruses and bacterial infections that leave her wiped for weeks. I’m especially concerned now given she’s in Florida.
As I’ve curated my Twitter account over the past year or so, I’ve sought more diverse voices. One of those groups has been folks who use the hashtag #CripTheVote to raise the awareness of people with physical disabilities and in chronic pain. These discussions are eye-opening. For example, when proposals are floated to address the real epidemic of misuse of prescription pain killers, the clamor goes up about people who need these drugs on a regular basis and should not be treated like potential criminals. I know people who have experienced both sides of this equation.
And then there’s my own situation. Nothing like your own pain to educate you! My main issue is that I was hard on my body for many years, and some things just wore out. I’ve already had surgeries on both knees and am facing replacement surgery on one of them. I have bone spurs in both shoulders and a tear in my left one, so surgery there is on the horizon as well. I have exercises I do to stretch and strengthen. But on any given day, my capacity changes.
I have also suffered from Irritable Bowel Syndrome (IBS) for years. It took me quite a while to understand that’s what was happening. While at one time stress was one of the biggest catalysts, these days it’s more often flying, not enough water or and forgetting my Benefiber. Being sedentary doesn’t help. Anyway, it hit today. Without getting graphic, I describe it as being “woken up from the inside” with accompanying cramping, nausea and more.
A quick look at some of the numbers behind these conditions is fairly staggering.
- In the U.S., more than 38 million people have migraine disease, with some estimates suggesting that this number may be even higher, impacting as many as 50 million or more. Some migraine studies estimate that 12 percent of adults in the U.S. population have migraines, with 4 million having chronic migraines. Employers that offer healthcare benefits, paid sick days, and disability insurance benefits will spend about $84,000 in annual migraine-related costs for every 1000 employees.
- IBS is the most common disease diagnosed by gastroenterologists and one of the most common disorders seen by primary care physicians, says the IFFGD. IBS affects between 25 and 45 million people in the United States, with two thirds being women. It is estimated that 10 to 15 percent of the adult population suffers from IBS symptoms, yet only 5 to 7 percent of adults have been diagnosed with the disease.
- According to the CDC, Fibromyalgia is one of the most common chronic pain conditions. The disorder affects an estimated 10 million people in the U.S. and an estimated 3–6% of the world population. The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
That’s a LOT of people suffering from the same ailments as the three of us. And what do they have in common?
You can’t tell by looking at any of us that we’re sick.
This is one of the things about people in chronic pain and discomfort. We often suffer in silence. We hide out because we’re embarrassed. We think that, somehow, we’re supposed to be better at dealing with this than we are. True, sometimes we are our own worst enemies. But most of the time, the best we can do is manage the symptoms and do our best not to let life get away from us.
During this pandemic, I am especially cognizant of these silent sufferers, a majority of whom are women. Those who live in fear they won’t be able to get the medication they need, that their bodies won’t be able to fight off the virus, that an already challenging world just got harder. They are your family, friends and co-workers. They are right there in front of you even as their ailment is invisible. Please keep them in your thoughts and prayers.
