When we get an acute illness like the flu or a cold, we feel sick for a week or two and then get back to our usual lives. This is how illness is “supposed” to go. But what happens when illness doesn’t fit this bill? What do patients with chronic conditions like diabetes or multiple sclerosis, or with persistent symptoms of Lyme disease or long-haul COVID-19, do when they can’t go back to their normal lives? Having suffered from the latter two — tick-borne illnesses that have plagued me for two decades, and a case of COVID-19 that took four months to shake — I’ve learned a few lessons about living with persistent illness.
Reframe your mindset
The most important — and hardest — lesson I’ve learned is that with debilitating, persistent conditions, there is no going back. I got sick at age 25. I had been working full-time, living an incredibly active lifestyle, burning the candle at both ends. Suddenly, the candle was gone. Bedridden through years of intense treatment, all I could talk about was getting back on track. I even threw a big “back to life” party when I finally achieved remission. Then I went right back to the high-functioning lifestyle I’d always known.
Three months later, I relapsed completely. It took another couple of years of treatment to get well enough to attend graduate school, socialize, exercise, and work. The journey wasn’t linear. I had to pace myself to have more good days than bad. I realized I couldn’t just wipe my hands of my illnesses. These persistent infections were coming with me, and not only did I have to accept them, I had to learn to move forward with them in a way that honored my needs but didn’t let them run my life.