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 piece I wrote for 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.

Here is the article:

If Arthritis is invisible, I’m Down with That

The darkness arrives swiftly in the dusky transition between autumn and winter, casting the vivid crimson and orange leaves of the season into the shadow of blue eventide. Long nights and short days make it difficult to see a pedestrian strolling in the dark, or the metallic glow of a street sign hidden in overgrowth. The sallow pall of the streetlamps withdraw into the gloomy mist of twilight and we curl into our dark coats and wool scarves, shielding ourselves from cold stormy days. The sun disappears behind the mountains, covering the land in deep shadow and masking our ability to see. But there are some things that are still hidden even in the light.

RA has been dubbed the invisible disease, especially in the young. People can’t see the pain and inflammation raging in the joints of a person with RA – perhaps if they’re really paying attention, they might notice a lack of spark in the eyes, a stiff gait, ring splints hugging the fingers – but these are trifling details that pass in front of the human eye, virtually undetected …and well…invisible.

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 inaction 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.

When I’m feeling absolutely hideous, I don’t want to look in the mirror and see that image reflected back at me – that does nothing to boost my confidence or make me feel better about my situation. An unexpected compliment on how well I look, can help pull me out of the mire of my disease and boost my confidence, even when the inflammation is raging in my joints and all I want to do is crawl under a blanket until the next morning. When I can look in the mirror and still see a little bit of beauty shining through, it gives me hope and certain resolve. I consider it a tiny victory in the battle against RA. So my joints are burning, and I feel rotten, but look at how my skin glows? I don’t care if it’s glowing from a slight fever from inflammation – there’s a plump rosy color in my otherwise pale cheeks and I look rather lovely today. I’m not above accepting a pleasant compliment thrown my way from a complete stranger. We may feel tired and haggard but nobody wants to hear we look that way.  

Finding the little joys is one way for me to prevail – if a little bit of lipstick can brighten the pall of my wan face or if wearing my favorite dress can lift me out of the gloom of living with RA, I’m darn well going to do it. I am living the best life I can with what I’ve been given. RA may try to take my life, but before it does, I will make every effort to look as good as I possibly can on any given day. So I say color and curl, put on that bright lipstick, and slip into that outfit that makes you feel nothing less than fabulous – and do it for no one but yourself. We’ve been diagnosed with a disease we may have to fight for the rest of our lives – I think we deserve to look as good as we can in the face of an ugly disease.

If RA is an invisible disease, I’m down with that.

 

 

 

 

 

11 thoughts on “Changing the View of Chronic Illness

Add yours

  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.

    1. 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.

  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.

    1. 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.

  3. 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).

  4. 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.

    1. 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.

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