I was out getting coffee the other day and I couldn’t get the cover on the cup.
I tried it one way. I tried it another way. I tried a different lid.
With a sigh, I asked the barista if he could give me a hand. He explained the lids were difficult and proved it by taking a couple tries before the lid was securely in place.
It’s not like I make a habit of giving up or anything. If I did, I’d never get anything done. I certainly wouldn’t have gotten my coffee …
So, maybe it was the lid. Maybe it was that my hands hurt so bad they felt numb. Maybe it was that I was so tired from not sleeping the night before. Maybe it just felt like it was one more thing … a common refrain from this chronic disease patient.
Nothing feels like one more thing quite like getting a new medication, because, guess what? There’s always side-effects and here’s what I get told:
It’s not so bad …
It’s not like it happens often …
It’s not like it happens to many people …
My emotions are wild and varied: discouraged, vulnerable, misunderstood, ignored, and even murderous.
You don’t get to say it’s not so bad …
You don’t get to say how often it happens …
You don’t get to say it’s not going to happen to me …
It always strikes me as peculiar, like it’s supposed to be comforting or reassuring, that side-effects are not so bad, uncommon, or likely to happen to you. And, when they do, well, at least they’re treating something that you want to get rid of.
I’m not getting rid of anything, remember?
I’m a chronic disease patient. That means forever. There is management of the disease. Holding it off, if you will, from doing more damage, quicker, or something like that.
It’s also about managing symptoms and side-effects of the disease.
Here’s the thing: Sometimes the side-effects are worse than the disease. Sometimes the fact there are things you can no longer do is worse than the disease. Sometimes the medications are worse than the disease.
I know, I know. Nothing is worse than a disease that ravages your body, shortens your life-span, damages your body so that all you are left with is lack of mobility, diminished dignity, and no lack of pain.
From my perspective … I just want to not feel sick from my medications all the time;
… I just want to be able to do as much as I can all the time; and
… I just want to think about the short-term at least some of the time.
Okay, so maybe we’re getting somewhere: It’s a matter of short-term versus long-term results; or is it? I would agree that sometimes you have to put up with very unpleasant side-effects in order to have a tomorrow. But, can I get some agreement that sometimes a person cares less about a tomorrow that hasn’t happened yet and is pretty wrapped up in enjoying the here that is?
Can I get some agreement that unless you’ve experienced these side-effects in all their unrelenting glory, you don’t get to talk to me about it in anything less than a compassionate, unhurried, full-on listening mode?
I know there has to be a balance between taking the medications, treating the disease, listening to my healthcare team, and living with the discomfort and unpleasantness of the side-effects.
It’s like the barista that helped me with my coffee lid said: Sometimes the lid is the problem. Not me … the lid.
I’m not the problem … stop blaming me for not taking the medications. I really am listening when I am told I need to be serious about treating my disease.
However, hear me when I tell you that just doing what you say can’t always be the way forward.
And, we could start with the disease … the options … being the problem, not me.