Not Just an “Ill Person” – Ways to expand your identity when you’re chronically ill

By Liza Karle

Sometimes it’s easy to get engulfed by all of the symptoms and limitations of a chronic illness. It can seem as if we are the illness. But I believe that it’s crucial for our mental health and future recovery to find ways to expand our identities to a wider definition than just “being ill.” Connecting with things outside our illness can keep our minds open to possibilities and help us feel less trapped by our present limitations. The challenge is to find ways to do this without going outside of our “energy envelope” or holding ourselves to unrealistic goals.

I have M.E./Chronic Fatigue Syndrome. In a bad patch, it can render me housebound, and sometimes bedbound. Recently, when I had to rest for hours per day, I had to find positive ways to distract myself and also remind myself that there was more to my existence than my illness. I refused to accept just being an ill person!

I started slowly. Using a smart phone from my bed, I began to participate in studies from universities across the world who needed data on many different topics (*1). I have done studies on everything from decision making, mental health, immigration, to maths quizzes. It kept me engaged and occupied in short bursts – perfect for my short concentration span.

Similarly, I also give my opinion on You Gov (*2), a website that focuses on political polls and current events. At election time, my opinion helped gauge the national voting mood in real time. My feedback on Teresa May and my confidence in the future of the world was logged, analysed and used in articles and news reports. I am an International Pundit!

Something else I can do when I am well enough to rise from my bed is to be a Google “local guide.” (*3) I take pictures of local haunts and review pretty much everywhere I visit, from a local rural post office to nearby cinemas. Now, I don’t have the energy to go far, but it turns out that the rural venues often aren’t covered in the Google guides, so my information and reviews are valuable. It’s an activity that is low-energy and a nudge to get out in the world again.

A step on from this is to do mystery shopping work locally, where you test and review services and products in your local areas (*4). They can be short, simple jobs that you can apply for as and when you feel up to it. It’s exciting to be secretly testing customer service and know that your feedback will help improve these services. These short tasks provide a vital boost to my self-esteem and keep me learning new things and interacting with people. I should add that all these activities I’ve talked about produce a (small) income. That makes me a ‘worker’ too.

All of these opportunities to expand my identity, give me something to talk about with people other than my illness and provide an answer to that dreaded question, “What do you do for a living?” People do seem obsessed with that question, and it can be depressing to explain that you do nothing because you’re ill. I can now pick and choose which of my modest activities to talk about and have something to contribute to the conversation.

These labels of “studies participant,” “local guide” and “mystery shopper” have helped me see hope for the future. I also know I could cope with another bad patch, and that by engaging in online studies and surveys, I will find it much easier to segue into a period of increased activity, mentally and physically when it passes.

These small ways I have found to connect with the world outside of the illness, have not only helped me break free from the limiting label of ‘ill person’ but have also set me on the road to a more hopeful recovery.



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