A Balancing Act: Talking About Arthritis and Chronic Illness

I have found that it is sometimes difficult to describe my conditions, honestly, and with full-disclosure, without people “feeling bad” for me.

I also hate to play the “victim” role, and I certainly try not to, but when I really delve into the complexities of the conditions I have lived with, it kind of sounds that way…like I’m a victim of some great injustice or something.

I hate that.

So I am posting this blog to ask: how SHOULD we talk about arthritis and chronic illness?

To me, there’s such a fine line between being truthful and open, versus sounding like an alarmist, or someone who needs to be pitied.

This has to change. We should be able to talk about our conditions without people “feeling bad for us.” On one hand, I want people to realize and understand what I deal with, what my limitations are, what I’ve been through, etc. On the other hand, though, I don’t want them to view me as any different from anyone else, or as less of a person, or any less strong, and worthy, and I certainly don’t want pity.

It’s hard to want people to understand and empathize, if you also don’t want them to feel bad for you or look at you any differently. It often seems that with understanding comes “that look” and “those sad eyes” and, more often than not, “you poor thing” or “you’re too young for all of this,” with a shake of the head.

Yes – having health problems stinks! But, I don’t want pity. I just want understanding when I need it; I just want help when I need it. I don’t want to make it change what you think about me. I don’t want to live with a stigma or just be labeled as “that sick girl” … or any other label, for that matter.

I’m me, chronic illness is just a part of me….and the sum of me is greater than its parts.

What do you guys think? How do you broach the sensitive topics of chronic illness and disability? Leave a comment!

Stay Well,

Ashley Boynes-Shuck

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4 thoughts on “A Balancing Act: Talking About Arthritis and Chronic Illness – by Ashley Boynes-Shuck”

I think it’s natural for us, as human beings, to feel sympathy and concern for someone who’s disabled or in pain. We can’t help but compare their situation to our own, even if we’re not doing it consciously. Think about how you, yourself, feel when someone–a stranger, an acquaintance, even a friend–tells you for the first time about a disease they’ve successfully kept hidden or that has only recently come to light: you’re concerned. You’re sympathetic. And you might even be a little bit uncomfortable and not know just what to say.

I think that when it’s necessary to tell others about our illness, we should just do so, as briefly and with as much cheerfulness as we can muster. And there’s nothing wrong with answering, “I wish I WAS too young to get this disease, but it can actually hit 3-year-olds,” or, “Hey, that’s life. I do great in spite of it!”

What does make most people really uncomfortable is when someone with an illness goes on and on and on about it, whether further questions are asked or not. It’s hard not to think that maybe they’re fishing for sympathy, and it’s harder still to figure out how to change the subject without sounding rude and uncaring.

We’re all just human. We all do the best we can. Don’t sweat the small stuff. 😉 (By the way, I really enjoy reading your posts, even if I don’t often comment.)

I tend to not discuss my chronic conditions. Until, that is, I need help or at a time I can’t do something like go out, etc. Then I keep it simple and short. For example if I need a door opened because my hands are a mess for that day, I ask the person going in before me if they could hold the door for me. And then I simply thank them. If it is a close friend I tend to explain why I can’t fulfill a promise of going out or whatever but they already know my circumstance…they are a best friend after all. For others that aren’t close to me, I keep it real simple and explain in minimal terms. So far this has worked just fine for me. But honestly, it took me years and years to say no to people. During that initial phase I did explain more to people so they didn’t think I was slacking off…ie – volunteering for the school, etc.

Unfortunately I have been called a hypercondriact (unsure of spelling), drug addict, just looking for attention, phoney and a myriad of other negative slurs and when I tried to share this with my executrix, she was uninterested as she does not recognise the severity of my Fibromyalgia and the continued crumbling and betrayal of my body through the rapidly progressive R.A. which was diagnosed to late, now leaving me unable to walk, and a myriad of other conditions caused by medical lack of interest or knowledge going back to the womb and continuing down to present, so I peek out every now and then, then I just hide inside my head again.

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