Learning to live well with a persistent illness
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 鈥渟upposed鈥� to go. But what happens when illness doesn鈥檛 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鈥檛 go back to their normal lives? Having suffered from the latter two 鈥� tick-borne illnesses that have plagued me for two decades, and a case of COVID-19 that took four months to shake 鈥� I鈥檝e learned a few lessons about living with persistent illness.
Reframe your mindset
The most important 鈥� and hardest 鈥� lesson I鈥檝e 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 鈥渂ack to life鈥� party when I finally achieved remission. Then I went right back to the high-functioning lifestyle I鈥檇 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鈥檛 linear. I had to pace myself to have more good days than bad. I realized I couldn鈥檛 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鈥檛 let them run my life.
Recognize your needs
Our bodies are good at telling us what they need: food, sleep, down time. We鈥檙e not always good at listening to these messages, however, because we live busy lives and sometimes can鈥檛 or don鈥檛 want to make time to take care of ourselves. When you have a persistent illness, ignoring your body鈥檚 needs becomes harder, if not impossible, and the consequences are more severe.
I鈥檝e learned that I have to pace myself physically and neurologically, stopping activity before I get tired so my symptoms don鈥檛 flare. I have to rest in the early afternoon. I must stick to a particular diet, stay on low-dose medications, and do regular adjunct therapies in order to maintain my health. Now, after recovering from COVID-19, I also need to be conscious of residual lung inflammation.
At first, I saw these needs as limitations. They take up time and energy and prevent me from living a normal life. But when I reframed my thinking, I realized that I鈥檝e simply created a new normal that works in the context of my illnesses. Everyone, sick or healthy, has needs. Acknowledging and respecting them can be frustrating in the short term, but allows us to live better in the long term.
Think outside the box
Once you figure out how to best meet your needs, you can plan other parts of your life accordingly. Your health must come first, but it isn鈥檛 the only important aspect of your life, even when you have a persistent, debilitating illness.
I had to shift my thinking from feeling anxious and embarrassed by what I couldn鈥檛 do, to optimizing what I can. I can鈥檛 work a traditional 9-to-5 job anymore, but I can write and teach on a more flexible schedule. I can鈥檛 go for an all-day hike (and might not want to anyway, due to ticks!), but I can enjoy a morning of kayaking. What skills do you have to offer, and what innovative opportunities might put them to good use? What activities do you miss, and how can you do them in an adaptive way? If that鈥檚 not possible, what鈥檚 a new activity you could explore?
Hope for the future, but live in the present
Learning to live well with a persistent illness does not mean resigning yourself to it. I鈥檓 able to do more each year, even though I sometimes have short setbacks. I change medications. I try new therapies. I manage my illnesses as they are now, but I haven鈥檛 given up hope for a cure, and am always striving to find ways to make my life even better. I can鈥檛 control what my illnesses do, but I can control how I handle them. And that makes life a little brighter.
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About the Author
Jennifer Crystal, MFA, Senior Writer and Patient Experience Representative
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