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The Old Lady in My Bones

Changing the View of Chronic Illness

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J.G. Chayko at a spa retreat.

“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/

 

 

 

 

 

About J.G. Chayko

I am a writer living on the beautiful West Coast in Vancouver B.C. I am a poet at heart but also write prose, fiction and creative non-fiction. In my thirties, while working for a Rheumatology clinic, I was diagnosed with early Rheumatoid Arthritis. I created " The Old Lady In My Bones" to share my experience living with this disease and to create an awareness that arthritis touches people of all ages, not just the elderly.

Discussion

11 thoughts on “Changing the View of Chronic Illness

  1. They have no idea what it takes to get to wherever we go or engage in life. A photo is not always worth a thousand words. We can’t smile? We can’t laugh? We can’t go anywhere ever? We can’t try new things? Wow. You are right. They do not know.

    Posted by Nikki | January 15, 2017, 3:28 pm
    • So true. Unless they’ve lived every moment of a 24 hour period in a person with chronic illness, no one can possibly comprehend what they endure. It takes work to live a life with disease – and the achievements won should be cause to celebrate, not regret. Thank you for your comment. Wishing you well. X.

      Posted by J.G. Chayko | January 15, 2017, 5:16 pm
  2. If I have to look as bad as I feel, I would dig a hole and jump in. I am self-conscious of what I post and say online. For instance, I have a picture right now of me next to my bicycle. I received a comment about why I can do this yet now work.

    My response; not working is why I can do it.

    Posted by Rick Phillips | January 15, 2017, 5:33 pm
    • My medical team encourageso me to exercise – it’s important to keep moving with arthritis. However, if I get tired and/or sore after 15 minutes of activity, I have the option to stop and rest. In a full-time forty hour a week job, that is usually not an option. Here is where understanding chronic disease starts to break down. Most don’t understand the chronically ill have to expend twice as much energy to reach the same level as a healthy individual. Thank you for sharing your experience. Wishing you well. X.

      Posted by J.G. Chayko | January 16, 2017, 7:45 am
  3. You go girl!

    Posted by Carla Kienast | January 17, 2017, 10:09 am
  4. Imagine! Not being able to smile just because you’re sick. I refuse to put on the costume RA dictates. You look great, by the way! Hope you enjoyed your spa day(s).

    Posted by Irma | January 24, 2017, 2:08 pm
  5. Hi there. I’ve been looking to connect with other people who have RA and glad to have found you. This post is wonderful. It sums up all of my most recent struggles with RA and how confused I am about the loss of friends. Friends who tell me I look great but pose it as a question…I guess I have to look as bad as I feel in order to be accepted. Maybe I should bring my medical records with me, lol! Thanks for posting, looking forward to reading more.

    Posted by 1wisewoman1 | February 2, 2017, 8:13 pm
    • Thank you for sharing your experience. RA is a challenging beast, not just for us, but for many people around us. There are great communities out there where people really do understand. I wish you more good days than bad in your battle. And no, you don’t have to look as bad as you feel. Look as wonderful as you are. Stay well. J.G.

      Posted by J.G. Chayko | February 4, 2017, 12:55 pm

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