J.G. Chayko selfie
Credit: J.G. Chayko

I press the dress against my body and look at my reflection in the mirror. My hair is pulled away from my face, framed by a few loose tendrils. My make-up transforms my face into something bright and beautiful. I slip into the dress, relishing the soft lace against my skin. The midnight blue is just right for highlighting the freckles on my face and the strawberry highlights in my hair. I look fabulous, like a strong healthy woman ready to celebrate life – but here’s the catch: how I look does not reflect the way I feel. 

Living with an Invisible Disease

Our challenge living with rheumatoid arthritis is that our disease does not always show in the body. It’s often invisible, hidden behind the façade of wellness. You will never see the inflammation flowing through our veins, the quiet destruction of our joints, the fatigue, the pain, the stiffness. If you look close enough, you might see the eyes have lost some sparkle, you might see the face tremble with the effort of holding it together, and a smile that doesn’t quite lift the cheeks. Our physical appearance can be deceiving with no understanding of what’s happening beneath the surface.  

It’s not easy living with an invisible illness in a society that judges on appearances. There’s this quiet expectation that a sick person should look as bad as they feel. The last thing I want to do is look in the mirror and see my disease reflected at me. With everything RA throws at us — the pain, the inflammation, the fatigue, the anxiety, and the struggle between what we know we are capable of and what physical abilities RA takes from us — battling a chronic illness can already be a sharp blow to our self-confidence and self-worth.  

It’s difficult to explain to others what’s going on beneath my appearance. RA is a physical disease and so it makes sense that one should be able to see it. In fact, it feels like most people need to see it to believe it. They can’t accept that I can look well and have still have a chronic illness. My disease must be seen to be real – and that’s frustrating because most of the time I don’t look sick.  

There’s more to living with RA then simply managing symptoms. There’s the emotional and mental struggle about how I feel in this body. Being a former dancer, someone who was once in peak physical condition, it’s hard to reconcile the change in my body from a disease I could feel but not see. 

Dressing Up to Feel My Best

On those days when I feel defeated by my disease, I dress up and put on a little bit of make-up. It’s the mental trick I use to pull what strength I have to the surface and put my best self in the spotlight. I don’t want to validate my illness by looking as bad as I feel – and I shouldn’t have to.  

There’s something about putting on a nice blouse, a blazer, a suit, or a pretty dress, which lifts me up and takes the pall of illness from my face. Dressing up has always been a part of my routine. Looking my best makes me be my best. It helps lift my mood, but it’s also a powerful cue to invigorate myself. A little bit of lipstick goes a long way in a making a dull day brighter. It empowers and motivates me. 

RA is always there, hovering around the peripheral edges of my life but I don’t wear my disease on my sleeve. It doesn’t define me or determine how I choose to present myself to the world — a new dress, new lipstick, new hair cut — these are the little things that I can control with an unpredictable disease.  

There are so many things we can’t control — how people perceive us, how our disease presents, how we feel when we wake up each new day. Looking my best when I’m feeling my worst gives me power over what I can control. It allows me to rise above my disease and shine in my own way. Just because I have a chronic condition doesn’t mean I have to look like I do – and just because you can’t see my disease doesn’t mean it’s not there. 

I live the best life I can with what I’ve been given. I don’t worry if people can’t accept that I can look fantastic even with chronic illness. I don’t base my worth on the opinions of other people. I don’t need to explain to them what’s behind the reflection. What’s more important is what I think of myself. We deserve to look as good as we can in the face of an ugly disease. When I can look in the mirror and see a little bit of beauty shining through, I consider it another little triumph in the battle with RA.  

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