That "Uh-oh" Moment
Rheumatoid arthritis. It’s a daily struggle, a slow burn, a never-ending battle. Usually. Once you live with the illness long enough, though, you’ll get an “uh-oh” moment. They don’t come often but when they do, it triggers a whole subset of acute emotions and feelings that are uncommon to even those of us suffering on a daily basis.
Now, I know that to a good portion of you an “uh-oh” moment sounds like an “Oops I pooped my pants” thing, but that’s not the “uh-oh” moment I’m talking about. I realize now that we may need to focus group that name but, despite the confusion, there is no mistaking the moment I’m talking about for those who have experienced it. It’s that feeling that materializes in that first millisecond when you realize that something is wrong that isn’t going to go away on its own.
Anticipating that anxiety-inducing moment
The scary thing is that with RA, it can be anything that precipitates an “uh-oh” moment. You know, now that I’ve heard it several times, we really do need to come up with a better name. Whatever. I digress. Rheumatoid arthritis is a systemic illness, and they are not f’n kidding with that, trust me.
Just me, alone, personally, one man, one handsome dude, has experienced the following complications or co-morbidities (a charming term): pre-diabetes, medication bloating to the point of spinal fractures, heart disease, heart attack, stents, being generally awesome-itis, joint and bone deformities, ED (I really should stop mentioning this one), lymphoma, hip dislocation, c. diff, pneumonia, pneumonia again, and hair loss. Almost every single one of those has been kicked off by an “uh-oh” moment where I realized that things weren’t going to get better on their own and I was going to have to, at the least, go to the emergency room.
The denial may take over
Being the stalwart RA patients that we are, though, sometimes denial takes over even though, in our heart of hearts, we know the jig is up. Even I’m susceptible to it – when my hip dislocated for the first time, I asked my then-wife if we could just watch a YouTube video and have her pop it back in. True story. What? They do it with shoulders, so why not hips? Well, it seems the answer to the question “how many people does it take to reduce (relocate) a hip joint" is three - a nurse and two orthopedic interns. Why?
Because the leg muscles are so strong that they have to basically push it back into place with a foot in the crotch like they are tearing a drumstick off a woolly mammoth. So, now you know. But my point is that even when that moment comes, we may not listen and my advice to all of you is to suck it up and deal with it. The sooner you recognize that you need help, the sooner it gets fixed. I once spent three days at home with severe anemia because I was in denial and by the time I got to the ER they had to drain several small people just to fill my tank up with blood again.
The balance of emotions during "uh-oh" moments
Why denial? Mainly because there’s a certain feeling that comes along with the “uh-oh” moment, and I’m talking emotional here, not physical. Any RA patient can tell you that we make our homes on the ledge that exists between living in constant fear and not giving a flying crap if we live or die. Granted, it’s not the best foundation on which to build an emotional home but it’s the only place that isn’t filled with the ghosts of what might be.
Even living on that razor’s edge, though, doesn’t make us immune from the terror that comes with the “what’s wrong now” revelation that the “uh-oh” moment brings. It’s a bouillabaisse of anxiety, anticipation, fear, and a dark form of excitement that doesn’t even have a name, and it all comes in one big jolt. It doesn’t simmer over time like most of the emotions we are used to so it’s a shock to the system, that pure hit of unadulterated emotional rocket fuel. My hip dislocated, ugh! I can hear the blood whooshing in my ears, something is really wrong, ugh! My foot’s come off, that can’t be right, ugh!
Sharing these feelings with others is difficult to do
Rheumatoid arthritis is like a giant jawbreaker of illnesses with arthritis at the center and, as time goes on, you lick more and more layers off. “Oh, diabetes, oh, heart attack, oh this one’s lymphoma, my favorite!” Having every disease in the world, all at once, is something no one outside of long-term RA patients can visualize. Most healthy people can’t even comprehend having one illness at a time, much less all of them.
If you tell someone you have RA, they say “Oh, I’m sorry to hear that.” If you tell someone you have RA, heart disease, diabetes, ED (really should stop mentioning this one), cancer, and hair loss, they say “banana, banana, banana” and then dance a minuet in a yellow tu-tu. Seriously, most people can’t handle it: it short circuits their emotional response apparatus.
It’s why it is so difficult for us to share the “uh-oh” moments, even with friends and loved ones. Like the line to get the new iPhone, people only pay attention to the first one or two up front who started sleeping on the sidewalk a month before for something you can order from the comfort of your own bed. After the third thing, you could tell people you have a purple toad growing out of your elbow and start ribbiting, and they’d say they were sorry to hear that. This is why I wanted to at least broach the subject. I hope that maybe it will help to start a few conversations here and there about the emotional complexity of having a systemic illness that comes with everything on the side, including toad elbow. Ribbit. Talk soon.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?