Chronic Disease: Planning for Uncertainty

Every year around this time my husband and I try to  get away for a long weekend.

Don’t get me wrong, we certainly go for the downtime, the quiet. It’s also the time of year we reflect on where we are and where we want to be. Having acquired more than a century between us, we figure we may as well put some of that hard-earned wisdom to good use.

Sure, we look over our finances, our budget, our housing needs, our professional lives, but we also consider our family life, social life, personal interests, and health and well-being. The way we look at it, if we don’t talk about it … if we don’t work at it … we can’t whine about not getting it.

In discussing what each person wants we discover things about each other, and even ourselves, that we may not have realized. We find where we meet on values, which is fundamental to a strong union. We can make realistic plans for what we can achieve as well as grieve and put away those things that are not going to happen.

Sometimes people ask me how I can make such plans in the presence of having a chronic disease; particularly when I am waiting on a surgery or a nail-biting test result.

My response is the same each time: How can I not?

I can’t focus on what I cannot, do not know.

I can’t focus on what I do not, cannot have.

I can’t focus on what I am not, nor ever will be.

It’s true: I don’t know what will happen with each surgery, each test result, or each new complication. It’s true: I don’t have the physical, mental, or emotional energy that I used to have and never will again. It’s true: I am not ever going to get “better” because I have a chronic disease and that’s not going to change.

But for me, it’s not about what I can’t do … it’s all about what I can.

I’m not in denial: I am quite cognizant of all that I can’t do. It’s just there is still so much that I can, so it feels wrong not to focus on that as well.

I’m not trying to put a postitive spin on things: I am realistic about what I can and can’t do. And, I am well aware that what I can do today isn’t going to be true for me tomorrow or next year.

I’m not ignoring what is: I am looking at the entire life that is mine, not just what seems to get in the way. When we focus on a single aspect of our lives – good or bad – we lose out in what the other parts can tell us. No, I’m not saying I’m happy to have a chronic disease; but I have made peace with it and that makes all the difference.

It’s a tenuous balance.

On the one hand you’ve got all the wonder life can offer and on the other you’ve got all the horror. But the way I look at it that means I’ve got two hands … two options … two pools from which to draw from …

So, I am taking all the plans, ideas, and possibilities from my planning weekend and I’m putting them into motion. Do I think they will all come to fruition? Please, my parents didn’t raise a foolish child.

Here’s the thing: There is no certainty that anyone – regardless of health status – will get all the things they want, that they work for, or that they plan for, so why shouldn’t I keep going?

I know, I know … I’ve got a few extra strikes against me.

I’ve got a few less tools in my kit bag.

I’ve maybe even got a little less runway than those with healthy privilege.

There will be days, maybe weeks, where little gets done. There will be setbacks, challenges, and unknowns to deal with. There will be ups, downs, and those irritating side-ways steps. Tell me something I don’t know.

Here’s something else I know: I’m willing to work hard. I’m even willing to work smart. I still look into the next year with an exciting plan that takes into account all the things I want, need, and, yes, deserve.

Why shouldn’t I?



It’s Just One More Thing

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.

It’s Not Crazy or Insane

It’s a good thing my husband likes nuts because no two ways about it, some days I’m a whole bag of nutty.

I’m not talking about crazy schemes … because now that I think about it, I’ve been known to come up with my share.

I’m not talking about wondering if the whole world’s out to get me … because you know the expression: just because you’re paranoid doesn’t mean they’re not out to get you.

I’m not talking about throwing a fit because something’s unfair … because you know at least some of the time it’s true.

No, what I’m talking about is when everything leads to a darker place, which leads to a darker thought, which leads to an even darker action. I’m talking about melting down because there isn’t anything else a person can do. I’m talking about out of control emotional wreckage.

When this happens, damage control is critical.

Of course, you should wait until the melt-down has run its course. Otherwise, you’re less control, more damage, you know? It’s something my care-giver husband is still learning …

What causes such an outburst?

That’s a great question … unfortunately, I know the answer.

As a patient with a chronic disease there are constant, unrelenting pressures, worries, changes, challenges, road-blocks, and pain. There is the disease you have been diagnosed with, but it seldom ends with a single illness. Once you have one disease, you are more susceptible to others.

There are side-effects to the disease, but also the medication to manage your disease.

There is no curing your disease, merely management; a fact you must live with.

There is the knowledge that as you age, there will be age-related disease, changes, and challenges you must contend with.

There is the knowledge that with every surgery, there are additional risks; and more surgeries.

There is the knowledge that what may be a simple cold or flu for one person could turn into pneumonia and an extended hospital visit.

There is the knowledge that the skin rash you go to your doctor with could take longer to diagnose because of your complicated set of variables.

There is the knowledge that few people around you will understand that just a single additional itch, cough, rash, headache, unexplained bruise, ache, pain, or dryness will set off a world of anger, despair, frustration, and loneliness.

Being a patient with a chronic disease is like riding a bad roller-coaster; one you don’t get a choice of riding or sitting out on. It’s the long, slow, straight up, all the while knowing it’s going to be straight down at some point. It’s the sharp twists and turns that take your breath away.

Now, for people that like roller-coasters that doesn’t sound so bad, does it?

What if I said you weren’t strapped in?

Still like it?

So, maybe it isn’t a surprise that sometimes enough is enough and we just can’t take anymore. Sometimes, we just want a break in the bad ride. Sometimes, we just want someone to tell us we aren’t crazy when we break down. Sometimes, we just want someone to tell us we aren’t crazy to keep going.

I’m reminded of Einstein’s definition of insanity: doing the same thing over and over and expecting different results.

Sometimes, I feel like that’s all I’m doing.

And, then, I get over it.

Here’s the thing about damage control: First, you let the melt-down happen. Second, you renew, rework, recommit priorities and your to do list. Last, but not least you give your care-giver a hug; if nothing else this signifies it’s okay to forgive and move on.

Yes, I’m getting back up and pushing back at the healthcare system that says it’s okay to wait 30 days for an urgent test. Yes, I’m pushing back at my doctor for medication that doesn’t make me feel worse than what it’s supposed to treat. Yes, I’m getting up every day whether I feel like it or not.

And, yes, I’m going to have a melt-down from time to time because that’s just part of my life.

That isn’t insanity; it’s called not giving up.