Proud to be us
Written on May 5, 2013 by Lene Andersen
Happy Arthritis Awareness Month! This is the annual 31 days of making the over 100 different types of arthritis visible and a reminder to be proud of who we are.
Proud? Of having a chronic illness? Yes, exactly.
Gay or LGBT pride has been around for a long time, as a positive initiative against discrimination. Recently, disability pride has started to emerge. This movement is also using positive messages to challenge ableism, counter prejudice and make the disability community more visible. Chicago is a leader in this, celebrating their 10th Disability Pride Parade this summer.
Not a bad idea, is it?
When you live with a chronic illness like inflammatory arthritis, you share many of the same challenges facing people with disabilities. Social invisibility, prejudice and discrimination. And I believe there’s another thing we have in common. When I read Sarah Triano’s definition of Disability Pride for the Encyclopedia of Disability, one sentence in particular stood out: “one of the single greatest obstacles we face as a community is our own sense of inferiority, internalized oppression and shame.” Granted, I was a lot more radical when I was younger, but is still resonated. Because we in the inflammatory arthritis community also lived with that sense of inferiority because we are ill, don’t we? We internalize the belief that illness makes us less than, somehow damaged goods. Many of us hide the impact of our disease, spending so much of what little energy we have to pretend we don’t have an illness.
This point is brought home to me through working with Show Us Your Hands. As the submissions to our Community Collage flooded in, photo after photo of beautiful hands showing the full range of inflammatory arthritis, so did the comments from the community. We’ve received letters from people saying that this was the first time they had deliberately taken a picture of their hands. Then it was the first time they shared them publicly. That doing so made them no longer feel ashamed of their hands, but instead proud of what they could still do.
I see this reflected throughout our online community of people living with different kinds of inflammatory arthritis. People share their stories on blogs, on Twitter, on Facebook and other social media. They share photos of not just their hands, but other parts of their bodies, too, showing the impact of the disease with which they live. They show the reality of living with these chronic illnesses when they post photos of a pile of medication, having infusions, a cane, jar opener or dressing stick. All of this brings visibility to what previously was hidden, and in so doing, directly challenges this misplaced sense of shame.
I say misplaced, because according to the dictionary, shame is a sign that you have done something disgraceful, dishonorable or wrong. Having a chronic illness means some part of your body got wonky. That sucks, but it’s not disgraceful or dishonorable. You can’t control your illness with the powers of your mind, but you can control how you live with it. You can control whether you will accept being less than. You can choose not to hide. You can choose to embrace your life, chronic illness and all.
And this is where pride enters the picture.
Living with inflammatory arthritis has a lot of challenges, so be proud of what you do and who you are. Be proud that you are meeting those challenges, whether that’s going to your job, taking care of your kids, cutting the grass or on really bad days, getting up and taking a shower. We should be proud to be part of a community that is sharing our experiences with each other, helping others through the hard times and laughing whenever possible.
Be loud. Be proud. Be amazed at what we can do together.
And maybe by next year, we’ll do a parade.
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.