Pretending to be someone you’re not is not just for Halloween when you have a chronic illness. It’s something we do every day, trying to put a better face on life and how we’re really feeling. We do it because of the stigma of chronic illness. We do it because a bit of daily denial can be a coping mechanism, allowing us to get through the day. And we do it because we want our lives to be about something other than just being sick.
The problem with pretending is that it can take over our lives. There is a fine line between putting on a smile so you can get through the day without explaining your chronic illness to every person you meet and denying your truth, even to yourself.
I did that — made a lifestyle of pretending that I was fine with a capital F. I minimized the amount pain I was in, pretended I didn’t need as much help as I actually did, and pushed myself to do as much as possible on my own, often ending up in a world of hurt because of it. Basically, I spent a lot of time trying to persuade others that despite the visible deformities and using a wheelchair, I was perfectly healthy and able-bodied.
In retrospect, that was probably a lost cause.
Whether your chronic illness is visible or invisible, pretending that it doesn’t affect you is a recipe for pain and exhaustion, as well as self-stigmatization and shame. Instead, owning the reality of you — all of you — will enable you to be empowered and build your self-worth.
Here are four tips to start living authentically:
Listen to your body
If we paid attention to every time our body ached, felt queasy, or asked for a rest, we’d never get anything done. So we build a wall between ourselves and our bodies. It can get so high and so thick that we can feel oddly separated from our bodies.
Find a comfortable place to sit or lie down, close your eyes, and open up. When I first tried this exercise, I actually asked my body how it was feeling. It was the start of a much better dialogue between my mental and physical selves. These days, I feel much more like a whole person and not coincidentally, I also feel better, both physically and emotionally.
When you have a chronic illness, it is normal to struggle with feelings of low self-esteem and a sense of being damaged goods. The next time you are in front of your bathroom mirror, take a good long look at yourself. And then, like Stuart Smalley, the Saturday Night Live character from the 1980s, do some self-talk. This can include telling yourself that you’re good enough just the way you are, that chronic illness has made you stronger, and so on. You might feel silly in the beginning, but it’s a good way to start building your self-worth again.
One of the great things about having an invisible illness is that no one knows you are sick. It is also one of the main drawbacks. Not being able to tell others that you are having a bad day and receive support can feel very lonely.
Being open about your illness and your limitations is wonderfully liberating. I used to hold it all inside, but when I started needing a daily nap, I tried being honest about it. Being completely open about needing this rest has been empowering and sets the tone for how others react. Once I treated needing a nap as just another part of my life, it stopped being a big deal. Most of the time, people respect this need. And I’ve practiced a couple of pithy (and occasionally sharp) replies to those who don’t.
Now that you are honest and unapologetic about what you need, follow through and do it. Show others (and yourself) that you respect the needs of your body and are willing to do what you can in order to feel better. It helps you feel at peace with yourself and your chronic illness.