A couple of months ago I decided to change the way I describe my illness to people.
When I was diagnosed with Rheumatoid Arthritis I hadn’t ever heard of the disease before, unlike so many others. Sure, I’d heard the word arthritis. My grandmother and mother had both had one form or another, and it was a very common word in media. But I didn’t know what Rheumatoid Arthritis was, or that it was common. And common in the sense that many Americans had mild cases of it, and that the tv apparently was splashed with the latest and greatest medications out there for it. I guess at the time I wasn’t very aware of the world around me (who is??).
When my illness turned aggressive and the pain grew worse and worse I would tell people when they asked what was wrong, “I have Rheumatoid Arthritis.”And I found that a very common response to this was along the lines of “Oh, everyone has that”, or “So, it’s not serious”, or my ultimate favorite, “Yeah, I think I have that too”.
Everyone, you say?
I highly doubt ‘everyone’ in the world feels this shitty.
And FYI, it’s pretty damn serious to me when I can’t get out of bed or make it to work.
Who is your Rheumatologist?
Those were just some of the comments back that would roll around in my head. It was so frustrating to hear people dismiss my disease like it was commonplace, like it was a headache or a bad case of the sniffles. Society had come to know RA as an everyday disease, as common as carpal tunnel or migraines. The term or diagnosis would be thrown around to describe anyone with joint pain who also got colds a lot. An autoimmune disease that could easily describe so many symptoms. Which is great for the people with the mild cases. But what about the percentage of us that really struggle with severe RA? How do we explain our pain and struggle when the world thinks it shares our disease?
I found the answer a few months ago when reading yet another article about my illness on Arthritis.net. The woman was like me, fed up with the brush off for her chronic condition. So instead of telling people she had Rheumatoid Arthritis, she coined it as Rheumatoid Disease. It was brilliant. Still an accurate title for my illness, but this confused all the ‘I know everything’ crowd. I started using it immediately, with excellent results. A quizzical look would come to someone’s face, followed by “Is it serious?”
Finally, a title that wouldn’t be brushed off with a smirk and an account of how everyone has that. People understood the term Rheumatoid, but the word disease threw them for a loop. ‘Disease’ had a stigma attached. It was a description of something serious, something dangerous, maybe even contagious. It drew people in to want to know more, they had to know more. The right questions were finally being asked. ‘Is it serious? Is there a cure? What’s it like?’ Open ended questions that allowed me to educate my fellow people on what I was going through without being pegged as a hypochondriac or overreacting. Isn’t it amazing how just one word can change the tone of an entire conversation? One word.
Of course I still come across people who dismiss my disease. There are people out there who will always shrug off what I tell them as just another common ailment. These people tend to be from the same crowd that spouts “Oh, it’s just Arthritis”, or “I’ve had arthritis for years”.
Oh yeah? What kind? What’s your treatment plan? How often is your pain 10/10?
These are all things I’d like to say..
But really there is no point. You can’t change the mind of someone who believes they are always right. Trust me, I grew up with a family member who thought they were the first person in the world to experience everything. A migraine? No one’s migraine was worse than theirs! The flu? No one has had a worst strain than them! There will always just be people who have to one-up you. It’s the way of the world.
But at least in my world I’d finally found a way to help some people see that it wasn’t just Arthritis.
If you would like to help my fight against my disease please visit my donation campaign at Christine Lilley’s Life Fund
Thanks for the ongoing support.