When we get an acute illness like the flu or cold, we feel sick for a week or two and then go back to our normal lives. This is how illness should “run”. 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-distance COVID-19, do when they cannot return to their normal lives? After suffering from the latter two diseases – tick-borne diseases that have plagued me for two decades and a case of COVID-19 that lasted four months to shock – I learned some lessons about living with persistent diseases .
Update your mindset
The most important – and hardest – lesson I've learned is that in debilitating, persistent conditions there is no going back. I got sick at the age of 25. I had worked full time, lived an incredibly active lifestyle, and burned the candle on both ends. Suddenly the candle was gone. Bedridden from years of intensive treatment, all I could talk about was getting back on track. I even had a big "Back to Life" party when I finally got into remission. Then I went straight back to the high functioning lifestyle I had always known.
Three months later, I fell completely behind. It was a few more years before I was healthy enough to attend graduate school, socialize, exercise, and work. The journey wasn't linear. I had to go up and down to have more good days than bad. I realized that I couldn't just wipe my hands off my illnesses. These persistent infections came with me and I had to not only accept them, but also learn to move forward with them in a way that met my needs but did not let them rule my life.
Realize your needs
Our body can tell us what it needs: food, sleep, downtime. However, we are not always good at listening to these messages as we lead busy lives and sometimes cannot or do not have time to take care of ourselves. When you have an ongoing illness it becomes more difficult, if not impossible, to ignore your body's needs and the consequences are more severe.
I've learned that I need to hold out physically and neurologically and stop activity before I get tired so my symptoms don't flare up. I have to rest in the early afternoon. I need to adhere to a specific diet, take low-dose medication, and take additional therapy regularly to maintain my health. Now that I've recovered from COVID-19, I also need to be aware of the remaining pneumonia.
At first I saw these needs as limitations. They take up time and energy and prevent me from leading a normal life. But as I reformulated my thinking, I realized that I was simply creating 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 it allows us to live better in the long term.
Once you figure out how best to meet your needs, you can start planning other parts of your life accordingly. Your health must come first, but this is not the only important aspect of your life, even if you have an ongoing debilitating illness.
I had to shift my thinking from being afraid and embarrassed about what I couldn't do to optimizing my options. I can't do a traditional 9-to-5 job anymore, but I can write and teach on a more flexible schedule. I can't hike all day (and maybe I don't want to because I have ticks!) But I can spend a morning kayaking. What skills do you have to offer and what innovative opportunities could you use? What activities are you missing and how can you adaptively do them? If not, what new activity could you explore?
Hope for the future, but live in the present
Learning to live well with an ongoing illness does not mean coming to terms with it. I can do more every year, although sometimes I have brief setbacks. I change medication. I am trying new therapies. I deal with my illnesses as they are now, but I have not given up hope of a cure and am always trying to find ways to make my life even better. I can't control what my illnesses do, but I can control how I deal with them. And that makes life a little brighter.
Follow me on Twitter @writerjcrystal.