Advocacy / Arthritis / Awareness / Fibromyalgia / Juvenile Arthritis / Personal Stories / Uncategorized / Wellness

Arthritis and Chronic Illness: Stripping Away Labels and Stigma – by Ashley Boynes-Shuck

When I was in graduate school, I took one psychology course that was oriented towards special education. One important thing that I took away from it was that we should always use, “people-first” language. At the time, I only thought of it in the realm of dealing with children with special needs, but, now, I see that it applies often in life.

Why is it “gay marriage” instead of marriage? Why are there Bic pens that are “ladies’ pens” because they are “comfortable” and in “girly” colors like pink and purple?  These kinds of labels cause divides and further separate us as humans. When people preface things with “for a woman….” or “for being sick…” it really infuriates me. Just because I’m open and honest about my illnesses and chose to speak out and be public about my conditions, does that mean I want to be labeled as sick, or always known for my health problems alone? No. That isn’t what advocacy is about, in my opinion. It should be the opposite – I’m thriving in spite of my conditions. I’m Ashley. I’m a person. I’m a person with health problems — but a person, first. I am not just an “arthritis patient,” “rheumatoid arthritis sufferer,”  “gluten free girl,” or  “brain surgery survivor.”  Those things are a part of ME.  *I* am the whole. They are portions of my life; fractions of my personality. They are not the sum of me. 

In fact, I feel that some labels bring people down. I am not casting judgment but just stating an observation: I have found through my thousands of interactions with other people who have chronic health issues, that some people hide behind the label of being a spoonie, a sickie, or chronically ill — almost if they are proud of it in some way. They are defined by it. They use it and their coinciding health problems as an excuse sometimes, and sometimes as a kind of warped security blanket.  The sickness and the label become their life. Now, I am not generalizing. Not everyone who is ill behaves in such a way. The vast majority do not. All I’m saying is that, sometimes, labels can be detrimental to our well-being. For instance, a person may be disabled, but once they start throwing that word around, there’s a better chance that they will buy into that mentality. You’re only as disabled (or, differently-abled) as you allow yourself to be. In fact, I like the quote by Scott Hamilton where he said, “the only disability in life is a bad attitude.”

I don’t want to live with all of the labels — especially these kinds of labels that create stigma and negative connotations. I want to be known for who I am in my entirety, and not just for being sick. Yes, I want to share my story, and I will never hide my health problems. That being said, I’m so much more than “Arthritis Ashley.”

I am going to try to cut back on referring to myself as being chronically ill. I am, that’s true. But, I’m  going to stop thinking like a sick person. As I said, it’s only a fraction of who I am. I am also a wife, a daughter, a sister, a best friend, an animal-lover, a fashionista, a writer and blogger, a Christian and a volunteer. Those are labels that I’m more happy to live with. I don’t want to always have to play the patient role. After all, it doesn’t define me. (And if we’re talking about labels….well…I’d rather them be on clothes and handbags! hehe)

Maybe if we start to go beyond the labels, and strip them away, we can begin to feel better about ourselves and get to know others beyond what we see on the surface.

How can we start referring to ourselves and others differently, to encourage positive connotations instead of negative ones?  Please share your comments, below.

Stay Well,

 Ashley Boynes-Shuck

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3 thoughts on “Arthritis and Chronic Illness: Stripping Away Labels and Stigma – by Ashley Boynes-Shuck

  1. I couldnt have said it better myself. You speak for many of us with RA or any other chronic condition for that matter. Thanks again for doing what you do for all of us!

  2. Well said. I’ve always had trouble accepting and owning up to a label, because it feels like doing so would say a piece of me is giving up the fight to always be healthier. (And that’s not going to happen!) I am much more comfortable acknowledging my health issues and talking about how I am working hard to be as healthy as I can be.

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