“Let’s face it, it’s not easy living with the invisible disease. The phrase “judging a book by its cover” comes to mind for people with RA. I am judged for how I look, and sometimes criticized for my actions (or inactions as some may see it) – for example, not being able to hold open a heavy door for someone or not giving up my seat on public transit. No one knows that my painful wrists are not capable of supporting a heavy glass door, or that my swollen knees can’t maintain balance on a moving vehicle. Filling out medical or dental forms about my past medical history often gets this bemused reaction: You have arthritis? You don’t look sick (enter dubious look here).
And there it is laid bare at our feet, that awful expectation that we should look as sick as we feel. Let’s face it, most days I don’t look sick. And you know what? I’m fine with that. Is it an unwritten rule that says we have to look as awful as we feel? I don’t think so. With everything RA throws at us – the pain, the inflammation, the fatigue, the anxiety, the doubt and fear, and the relentless battle between what we know we are capable of and what physical abilities RA takes from us – battling a chronic illness is a sharp blow to our fragile self-confidence.”
Recently I saw a post on social media that was just mindboggling. Apparently, a disability claim was denied because a patient’s social media page showed pictures of her smiling and “engaging in life”. I was astounded. I couldn’t believe I was actually reading something so ridiculous. Since when did people with chronic illness lose their right to have any moments of joy in their lives?
I have always taken each day and lived it the best way that I can in spite of what RA chooses to throw at me. Instead of wallowing in my disease, I choose to focus on the positive things in my life, and one of those positives is that I don’t have to look as miserable as I feel. The challenge that patients with RA and other chronic illness face is that we don’t “look sick”. And why should we have too?
Here’s the deal: just like everyone else, we have good days and we have bad days. Just because we struggle with a chronic condition doesn’t mean we don’t deserve moments of happiness and wellness; it doesn’t mean that we can’t look good and even dress ourselves up every once in a while; it doesn’t mean that we don’t deserve a break from the challenges of our lives, just like everyone else.
My most recent piece on Creaky Joints is all about escaping the expectation that I should look as miserable as I feel. I prefer to empower myself against disease, not surrender to it. And in spite of what the world presumes I hope we all have moments of joy and achievement, that we can live life on our terms and one day change the view of chronic illness.
You can read the full article here: https://creakyjoints.org/living-with-arthritis/arthritis-invisible-im/