Do you remember when you were first diagnosed with a chronic illness? In a way it was empowering: Finally, you could do something about your symptoms! Finally, you could take steps to address your illness and maybe even find a cure! But then months or years after your diagnosis, with some treatment successes but many more failures or partial successes, you’re still sick, or at least you can’t seem to kick the symptoms that linger in your body and in your emotions.
It’s like COVID-19. In March, it felt like we had just gotten a terrifying diagnosis, but along with the diagnosis, we knew what to do. Our prescription was isolation and for the most part we embraced it, realizing this historic time required massive societal changes. Social distancing was supposed to be the cure, right? But now, like a chronic illness, society is ready to be done with the pandemic…but the pandemic isn’t ready to be done with us.
Here’s another thing people with chronic illness know all too well: When fatigue sets in and you (inevitably…) come off your treatments, your illness can come roaring back all too fast. In individuals, maybe it’s an immune system just waiting for you to forget to fill your prescription so that it can resume gnawing on your joints and your gut. Or it’s the nagging symptoms of depression or anxiety that you can keep at bay with regular yoga classes and conversations with good friends, but when you miss a week and then another week, resurface with a vengeance. Now as a society, the fatigue we feel is making us all lax with our treatments — people everywhere are forgetting to refill their “prescription” for social distancing, and along with lapses in adherence to our societal “treatment plan,” COVID-19 rates are on the rise in many states.
What this means is that people with chronic illness have something essential to teach society. We KNOW what happens when we take our foot off the accelerator of our treatments. We KNOW what happens when we come off our medications. And some of us, if we’re lucky, have developed physical and emotional (and financial…) strategies to manage the long term experience of existing with illness.
So here’s the question: What do you know as a chronic illness sufferer that you would you tell society about living in the time of COVID-19? What is your advice for enduring, for dealing with flare-ups, for living with uncertainty about what tomorrow will be like? People with chronic illness have a hard-won wisdom. Maybe it’s time to lead society as a whole toward this same understanding.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.