Learning to live well with ‘long-haul’ illness

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By Jennifer Crystal, Harvard Health Blog
Posted on June 29, 2021

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 active lifestyle, burning the candle at both ends. Suddenly, the candle was gone. While I was 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. 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, and 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.

Recognize your needs

Our bodies are good at telling us what they need: food, sleep, down time. We’re not always good at listening to these messages, however, because we live busy lives and sometimes can’t or don’t want to make time to take care of ourselves. When you have a persistent illness, ignoring your body’s needs becomes harder, if not impossible, and the consequences are more severe.

I’ve learned that I have to pace myself physically and neurologically, stopping activity before I get tired so my symptoms don’t 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’ve 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’t 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’t do, to optimizing what I can. I can’t work a traditional 9-to-5 job anymore, but I can write and teach on a more flexible schedule. I can’t go for an all-day hike (and might not want to anyway, due to ticks!), but I can enjoy a morning of kayaking.

Ask yourself what skills 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’s not possible, what’s 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. In my case, I’m 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’t given up hope for a cure, and am always striving to find ways to make my life even better.

I can’t control what my illnesses do, but I can control how I handle them. And that makes life a little brighter.