Learning to live well with a persistent illness – Harvard Health Blog
When we have an acute illness like the flu or a cold, we feel sick for a week or two and then go back to our usual life. This is how the disease is “supposed” to go away. But what happens when disease doesn’t fit into this bill? What do patients with chronic conditions like diabetes or multiple sclerosis do, or with persistent symptoms of Lyme disease or long-term COVID-19, when they cannot return 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 tremble – I learned a few lessons about living with persistent illness.
Reframe your mindset
The most important – and most difficult – lesson I have learned is that with debilitating and persistent conditions, there is no turning back. I got sick when I was 25. I had worked full time, leading an incredibly active life, 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 “come back to life” party when I finally got remission. Then I went back to the very functional lifestyle that I had always known.
Three months later, I completely relapsed. It took a few more years of treatment to recover enough to attend college, socialize, exercise, and work. The trip was not linear. I had to calm down to have more good days than bad. I realized that I couldn’t just wipe my hands from my illnesses. These persistent infections were coming with me, and not only did I have to accept them, but 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 able to tell us what they need: food, sleep, downtime. However, we are not always good at listening to these messages, as we live busy lives and sometimes cannot or do not want to take the time to take care of ourselves. When you have a persistent illness, ignoring your body’s needs becomes more difficult, if not impossible, and the consequences are more serious.
I learned that I needed to calm myself down physically and neurologically, stop activity before I got tired so that my symptoms didn’t kick in. I have to rest in the early afternoon. I need to be on a special diet, continue to take low-dose medication, and take regular adjunct therapies in order to stay healthy. Now after recovering from COVID-19, I also need to be aware of the residual lung inflammation.
At first, I saw these needs as limits. They take time and energy and prevent me from living a normal life. But when I reframe my thinking, I realized that I had just created a new normal that works against the backdrop of my illnesses. Everyone, sick or healthy, has needs. Recognizing and respecting them can be frustrating in the short term, but allows us to live better in the long term.
Get off the beaten track
Once you’ve determined the best way to meet your needs, you can plan other areas of your life accordingly. Your health should come first, but it is not the only important aspect of your life, even when you have a persistent and debilitating illness.
I had to change my way of thinking from feeling anxious and embarrassed about what I couldn’t do to maximizing what I could. I can no longer work a traditional 9 a.m. to 5 p.m. job, but I can write and teach on a more flexible schedule. I can’t do a day hike (and I might not want to anyway, because of the ticks!), But I can enjoy a morning kayaking. What skills do you have to offer and what innovative opportunities could use them? What activities do you miss and how can you do them adaptively? If this is not possible, what new activity could you 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 am able to do more every year, although I sometimes have short setbacks. I’m changing medicine. I am trying new therapies. I am managing my illnesses as they are now, but I have not given up hope of a cure and am still struggling to find ways to make my life even better. I can’t control what my illnesses do, but I can control how I manage them. And that makes life a little brighter.
Follow me on twitter @writerjcrystal.
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