A person with an angry face making stern hand motions popping out of a megaphone.

The Jerk Inside - Being an Annoying Patient

The reluctantly annoying patient. We all know them – they live inside us and only begrudgingly make an appearance when all other avenues have been exhausted.

It recently happened to me. Despite all my attempts to keep the monster caged, it found its way to the surface. After being jerked around by multiple parties for the second month in a row, it was inevitable.

I hate being that person, yet it’s a necessary part of living with rheumatoid arthritis (RA) and chronic illness. Why?

RA care is connected to overall wellbeing

I think of it like the Hulk but instead of “You wouldn’t like me when I’m angry,” it’s “I wouldn’t like me when I’m assertive.” Or something catchier (we’ll workshop it).

When you live with rheumatoid arthritis or any chronic illness, your life is beholden to things like blood tests, physical therapy, and medications. And when any of those get interrupted, the anxiety starts to build, and The Jerk - as I call him - starts to wake up.

Think about it – if your day-to-day wellbeing was tied to an injection that you require once every 24-hours and someone threatened to bar you from getting it, you’d react violently too. Figuratively, that is - no real violence here. Please don’t go and punch your PA.

Persistent pestering mode

Still, when worse comes to worst and you are in dire straits, the jerk inside starts to manifest, and the first stage is persistent pestering.

Because I so much hate turning into that annoying patient, I do whatever I can to head off the transformation at the pass. In order to prolong the time that it takes for The Jerk to manifest, I split it into 3 steps.

Delays in refilling medication

The first stage is persistent pestering. As I said recently, I had to deal with an issue myself. For the second month in a row, the refills for the shots I need every day - available only from 1 pharmacy in the entire country - were not being refilled on time.

In fact, last month I had to stretch out the remaining 2 over a 4-day period. As you can imagine, that worked wonders for my RA and ended up stealing time from me. As you know from my previous posts, nothing is more valuable to someone with chronic illness than time.

Contacting the doctor multiple times

So, when I sensed it happening again, I immediately went into persistent pestering mode – the first stage of The Jerk. This involves calling or using the portal to contact the doctor two, three, or four times a day in order to get them to send the needed refill script.

As you can imagine, this doesn’t go over well with the office workers therein and, at this stage, you must be careful not to anger the staff too much because as we all know – the staff are the gatekeepers of the doctor’s office.

You know what happens when you anger the gatekeeper – just ask Dorothy. ("Nobody gets in, not nobody, not nohow!")

Anxiety sharing

The persistent pestering works about half the time and then I need not go further down the “Jerk” rabbit hole. It worked last month. It didn’t work this month.

After several calls and messages parsed out over a 3-day span, the pharmacy informed me that no prescription was forthcoming. Great, that meant it was time for stage two of The Jerk – anxiety sharing.

When persistent pestering doesn’t move the needle, then more drastic measures are needed. It’s time to share with the doctor and his staff your anxiety in possibly being without medication.

Pulling on their heartstrings

It’s nerve-racking and it can be downright scary to know that you might have to wake up the next day without the medication most responsible for keeping your RA in check. Basically, you are banking that pulling on their heartstrings will provide the motivation needed for them to get that paperwork moving.

Of course, if said people have hearts made of black obsidian stone, then this tactic won’t make much of a difference at all.

The final stage of The Jerk

Finally, there’s the final stage of The Jerk – which is, well, pretty much the name says it all. Now, I’m not advocating for being an actual jerk because that will likely only make the situation worse, but you are going to have to get assertive up in the place.

Sorry, I know how uncomfortable it makes most of you. Why? Because I’m the same way. I absolutely hate being forceful in my communications, and especially with doctors. I hate demanding things, and I hate falling into that “annoying patient” stereotype.

The nuclear option of patient communications

Unfortunately, the simple fact is that sometimes when you are dealing with doctors, nurses, pharmacists, and other medical professionals, it’s the only way to get what you need.

You have to use strongly worded phrases like, “I don’t know what’s happening there,” and, “Why this isn’t getting done I’m not sure,” and even, “I’ve never had issues like this before.” (It makes me uncomfortable even typing them here.)

Yes, it’s the nuclear option of patient communications, but it’s sometimes necessary for those with RA and other chronic illnesses to demand the things we need to live.

Why do we need to strongly demand basic things?

Which brings me back to my original question – why do we need to so strongly demand the basic things we need to survive?

Why do we feel like we are the ones doing something wrong when we do? We shouldn’t. The office workers probably don’t have to demand water and food, both essential to life.

Our medications and tests are just as essential to us. Why do we have to turn into jerks just to get it?

Unfortunately, it’s as much of a part of living with chronic illness as fatigue and unsolicited advice. Talk soon.

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