A Patient’s Perspective: You Gotta Want it Bad … or Do You?

It used to be when we wanted something we’d ask how bad we wanted it. We’d either shrug and say not worth the effort or dig in deep and put everything we had into achieving that goal. It’s not like I don’t still ask myself that, but I’m wondering if I’m asking the same question anymore.

Here’s the thing: I’m a chronic disease patient but it’s not that I don’t still want things out of my reach … I’m an over-achiever so that isn’t going to change.

It’s not that I don’t still want things period … I’m not done with living so that isn’t going to change.

And, it’s not that I can’t martial the energy, determination, and assorted resources to put towards achieving a lofty goal … I’m older, wiser, and let’s not forget stubborn so that isn’t going to change.

So why do I hesitate when asked how bad do I want something?

Maybe it’s an appreciation for what it takes to get what I want. Maybe it’s a wary respect for the effort the interruptions, wrong turns, and setbacks demand … or blood, sweat, and tears … that’s required. Trust me, it’s all that.

Or, maybe just getting out of bed is the biggest thing on my list that day.

Yes, how bad do I want it has a new meaning.

And there’s the rub … it’s not just a matter, anymore, of how bad do I want it. Believe me, I want it bad. It’s the despair, weariness, and sheer frustration I have to wade through in order to get what I want.

Case in point: After multiple post-surgical complications I’m finally at what is called “as good as it gets”. I’ve been given the green light to resume my prior pharmaceutical regime which includes a weekly dose of methotrexate. And, I’m able to take on most of the mental and physical activities I enjoy (and those that I’m just supposed to do whether I enjoy or not).

All seems great.

But, I get tired more easily. I have recurring infections at the incision sites. I can’t seem to stay focused like I used to … And that’s just the way it is … I’m not complaining and I’m not looking for sympathy. What I am hoping is to share how it feels to be a chronic disease patient.

Every time there’s another complication …

Every time there’s another surgery …

Every time there’s another something we need to deal with …

Which brings me to the question: What do I want? Simply put, I want to do as much as I can, for as long as I can. My healthcare team is always eager to help me with this goal. They are full of advice. Most of it’s good. Some of it’s solicited.

I know I need to be active. I know I need to stretch my comfort zone. I know I can’t just give in to doing nothing. Just understand, appreciate, and respect that there will be days when it looks like all that gets tossed out the window.

Be careful how you throw down that gauntlet of how bad I want something …

I ask you to consider what you’re asking of me. It’s not just dig deeper. It’s not just keep moving forward. Okay, maybe it is those things, but it’s also understanding just how deep the quicksand is on days when getting out of bed is top of my to-do list.

By all means, keep asking me the tough questions. Keep pushing me just like anyone that enjoys healthy privilege. Just remember, it’s hard to answer how bad I want something when I’m not really sure what it is going to take .. or what I have to give.

It doesn’t mean I can’t do things. It just means if I don’t take into consideration all the things that I have to deal with, I will fail. And, for this over-achieving, stubborn, live til you die chronic disease patient, I like to win. There’s no reason I can’t win. I just have to be clear about what that means.

Here’s what’s clear: Just because some days it doesn’t look like I want much, or am doing much, or even that I’ve changed my mind about what I want … believe me, I know what I want and I want it bad.

It’s just sometimes all I want is to be able to get out of bed.

And we have to accept this too is my life.