How to Maintain Independence with Chronic Illness

Happy Independence Day! For those of you in the United States, usually the Fourth of July weekend is a filled with fun celebrations and family.

But what about those of us with chronic illness that can often negatively impact our ability to do fun activities? We are used to missing out on big events, so it’s actually something we probably have adapted to. But what about the everyday-non-holiday stuff? 

For me, when I was diagnosed with late-stage, chronic Lyme disease and Postural Orthostatic Tachcyardia (POTS), I found that I went from a financially and physically independent young woman, to almost feeling like a dependent child. I depended on my parents for help with treatment, and those supporters around me for when I couldn’t stand on my own.

Once I got through Lyme treatment however, I found it easier to mentally cope with POTS and Lyme through a few simple ways to establish my independence. Even though they don’t seem like big things, just that small amount of autonomy helped me to feel more in charge, and motivated me to chase that feeling.

1. Sort your own medicine.

I know it doesn’t seem like a big deal. But if you take 30+ pills per day, being able to take charge of that and organize it myself made me feel like less of a dependent and more of an adult, taking control of my situation.

2. Make your own food.

If you are able to stand for a long enough period, control your (strict) diet. Making this effort made me feel less like a child with chronic flu, and more like a young adult on a health-kick, which is so “in” right now.

3. Listen to your body and know your limits.

As we get older, learning our physical limits should be a given. But when you’re sick, you often have to be more sensitive to the signs your body is giving you. If you can’t exercise like you usually do one day because you didn’t sleep well enough– don’t. Maybe just go for a walk instead. Find ways to compromise so that you are kind to your body.

4. Make your own doctor’s appointments and do your own research.

When long-term antibiotics almost killed me, I researched other options in addition to talking to my current specialists. Did my mom help? Of course, I am her daughter. But I was the one spearheading the effort, making the decisions with my doctors as a team.

5. Take full advantage of those good days.

Whether this means be productive in work, exercise, health, diet hobbies or in your relationships, make effort to seize the day. Go out of your way to thank your friends and family, create art, or improve your health to extend this feeling of “good day bliss”.

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