20 Tips from 20 Years Sick, Part 1
Ten years ago, I wrote “10 Tips from 10 Years Sick.” I assumed that, by now, I’d have recovered from the virus I contracted in 2001. Now I’m reading about Covid “Long Haulers” who have many of the symptoms I’ve struggled with for 20 years, from physical pain to terrible fatigue to brain fog. My heart goes out to them.
A lot has happened to me since 2001, but there’s been one constant: chronic illness, which includes chronic pain. So, it’s time for “20 Tips from 20 Years Sick.” I’m dividing this into two parts so it won’t be too long. Here are the first ten.
#1: Don’t underestimate the impact of sheltering-in-place.
Some people have enjoyed sheltering-in-place They love empty calendars. They’re finishing old projects. They’re catching up on sleep. (These are mostly people who aren’t working from home and who don’t have children struggling with online schooling.)
Even though I’ve, in effect, been sheltering-in-place for 20 years, Covid restrictions have caused a flare in my symptoms. I’ve heard from many other chronically ill people who are having the same experience — partly due to stress over uncertainty about when life will return to normal; partly due to the disruption in our routines. It’s disappointing that I’m more sick than I was before Covid-19 appeared. If this has happened to you, take solace in knowing you’re not alone.
#2: Remember that life before chronic illness wasn’t always easy.
I cover this in my new book, How to Be Sick: Your Pocket Companion, under the “challenge” Accepting without Bitterness How Restricted Your Life Has Become. I write: “Be careful not to look upon your life before chronic illness as always carefree and unlimited. It wasn’t. You couldn’t do whatever you wanted, whenever you wanted. No one can.”
#3: Remember that chronic illness comes with the human condition.
It was a tremendous relief to realize there was nothing wrong with me just because I became chronically ill. Everyone faces health challenges in life. It can happen at any age. When you accept that pain and illness are a natural part of the human life cycle, you can stop feeling guilty about what’s happened to you.
#4: Listen to your body.
Like many of the other tips, this applies to both physical and mental illness. If your body is telling you to rest, find a way to rest as soon as you can. If it’s telling you that a slow walk would feel good, take that walk. Before I got sick, I hardly ever listened to my body. Now it has my ear all the time.
#5: Don’t get down on yourself for feeling blue.
Everyone gets the blues now and then, even those in good health For the chronically ill, the blues can be particularly intense because it’s often triggered by a feeling of hopelessness about our medical condition. Remember that the blues is like the weather; it blows in and blows out. It arises in the mind, stays awhile, and then passes. I like to disarm its sting by greeting it with friendliness, even though it’s an uninvited guest. I’ll say something like, “I know you, blues. Come to visit again, have you?” Then I wait the mood out by doing something nice for myself.
#6: You don’t always have to “think positively.”
Watch out for what’s called “the tyranny of positive thinking.” Are we never supposed to feel disappointed or frustrated due to our health struggles? That would be holding ourselves to an impossible standard. Although the mind and the body are interconnected, I do not believe that “thinking positively” or visualizing 100% health can cure illness.
#7: Despite being chronically ill, you’ll still have to deal with the life’s hassles.
When I stopped working due to illness, I thought the one positive would be that I could arrange my life to be hassle-frees. I’d live quietly and not take on commitments that were beyond what I could comfortably handle. Unfortunately, I forgot about everyday hassles, such as the plumbing backing up!
Nor am I free from getting involved in the struggles of those I love. John Lennon said it well: “Life is what happens while you’re busy making other plans.” I was planning a hassle-free life to accommodate my illness. Once I realized this would be impossible, I changed my attitude; now I work on graciously accepting life’s inevitable unwelcome surprises.
#8: Before you go to bed, write down something enjoyable you’ll do the next day.
Write down something fun or fulfilling. Putting your plan in writing makes it part of your agenda for the next day and this increases the likelihood you’ll follow-through on it. Of course, sometimes life intervenes, and it’s wise to change your plans. If this happens, no blame! That very evening, write down something enjoyable you plan to do the next day.
#9: Accept that not everyone will understand what your life is like.
I used to get upset when people didn’t understand me the way I thought they should. But this only made me feel worse, physically and emotionally. I’ve finally made peace with the fact that some people will never understand what my day-to-day life is like. When I accepted this, my life improved tremendously because I stopped striving to get everyone to understand. Now I do my best to explain, and then let it go.
#10: Recognize that being spontaneous may no longer be possible.
I hope that you’re still able to do something fun at the last minute (within Covid-19 restrictions of course). I can’t be spontaneous like this. I must plan ahead if I have a commitment coming up. I learned this the hard way: over and over, I found myself stuck in situations beyond my energetic capabilities because I hadn’t planned ahead. I don’t enjoy having to plan everything out so carefully, but it beats the alternative: a flare in symptoms that can leave me bedbound for days.
Stay tuned in the weeks to come for Tips #11–20.
