What chronic illness can teach us about conserving our energy for what matters and taking imperfect action

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I have been chronically ill for 20 years. It started with mono back in college, and then cascaded to hyperthyroidism, then stomach issues, and then migraines…

…come to think of it, I had migraines when I was 12, so maybe it’s close to 30 years, but those migraines cleared up until recently, so I really don’t count it as an unbroken chain…

…although, that also doesn’t take into account the anxiety and depression I’ve had for as far back as I can remember.

Long story short, I’ve been sick for a while. There is a (mostly) unbroken chain of chronic illness for two decades. Some of my chronic illnesses are nearly old enough to drink.

They tend to compete with each other for supremacy, and I feel very much like Mr. Burns in that classic episode of The Simpsons where he finds out he has every illness.

I won’t say that chronic illnesses are a good thing by any stretch, but they do put things into perspective, especially when stuff goes wrong.

There is nothing that will stop my chronic illnesses. I can allay them for a time, but they will always flare up because they are chronic, which is what that word means.

Even if all my illnesses went into remission for the rest of my life tomorrow, there will still be the ever-present fear in the back of my brain wondering when the timebomb will go off again.

Still, there are good things about them.

For instance, I stopped asking why random things happened because I knew the truth; there is really no logical reason. Some things just happen.

Bad things happen to good people.

Good things happen to good people.

Mostly, things just happen to happen, randomly and without reason. As a person who grew up believing he could reason his way out of most things, succumbing to the whims of an uncaring universe helps me get through every single day.

Without that knowledge, I would be insufferable…well, more insufferable.

The world is chaos, but there is beauty in that chaos. It took a long time, but I learned it is often enough to know that, even if you don’t know why.

If you’re on this Substack, you probably know I recently lost my Facebook account. I don’t know exactly why it happened, or why it happened now, but I know that it happened, and those facts allow me to move on and do what I have to do to survive.

(Funny story: my new ad account was restricted again and while it’s hard to laugh about it, that’s all I can do because Facebook is random, mercurial chaos at a level that would make Kafka go mad at the sight of it.)

If I tried to dissect every random slight and incongruity, I would descend into madness. It is only by succumbing to the chaos that I can move on and see the good in the bad.

Seeing the good in the bad is essential to getting through life with a chronic illness, and if you look hard enough then the bad can help you see things you couldn’t otherwise.

My dog doesn’t like to eat dinner sometimes. We don’t know why. All their tests came out normal, but they have had a hard life. They were brought over from China after being saved from a dog meat factory and has a huge bald spot on their neck from having tufts of hair ripped out.

Still, he’s a happy (if often aloof) boy, but sometimes he doesn’t like to eat. Maybe it’s trauma. Maybe he has an undiagnosed condition. Maybe he’s just picky.

It doesn’t really matter why. It matters that.

Usually, we bring him into another room or follow him around the house until he finally eats (because our other dog will goblin it up if we just leave it out).

Don’t be taken in by her cuteness, this little dog is a bottomless pit for food.

Since Cocoa (our bigger dog) gets so much more food than Cheyenne (our smaller dog), we can’t just leave it out. So, sometimes it becomes quite the show.

Earlier this week, however, my splitting headache prevented me from doing anything but laying the bowl down in our bedroom and closing the door so Cheyenne couldn’t get at the food.

I didn’t push the food on him. I simply sat and pet him for a while. Eventually, he chose to eat on his own, and that was beautiful.

I felt like we had a breakthrough that never would have happened if I arrogantly pushed my will on my poor dog.

Why didn’t he eat? I don’t know.

I knew that he didn’t eat, though, and being okay with that allowed me to get him to eat, and allows him to survive until we can figure out the deeper why.

But also…there might not be one. There might not be a why, only a that.

Survival is very important to somebody with chronic illnesses. Why did you wake up so tired that you can barely move? Which of your chronic illnesses is dragging you down today? Why can’t you eat a certain food now that you could for years without your body falling apart?

After years and years, it matters less why one of my ailments is flaring up, and it matters more that it is flaring up, because it is only in accepting it is happening which allows me to relieve the problem, mitigate the damage, and prevent it from happening again.

Chronic illness is all about mitigating damages, and in order to do that you must be constantly analyzing yourself for signs of distress.

I’m always analyzing my launches to figure out how to do them better, and how to help people better in the future.

But, when you are in the middle of a failing launch, it doesn’t much matter why things are happening, at least not nearly as much as knowing that it is happening, and what you can do to mitigate the damage.

Once you have done that, you can analyze why it happened at a deeper level and try to prevent it from happening again, but you have to take action now to survive.

I use the word try very deliberately because you cannot guarantee that your problem will never happen again, and sometimes the thing that saved you one day will destroy you the next.

I used to swear by melatonin to sleep. Then, one night, it started giving me migraines so bad I couldn’t do anything the next day. I have no idea why, but I know that I stopped using it and the migraines stopped. I don’t sleep anymore, which is a far cry better than writhing in agony.

It was important to know why I had a migraine, but why did something that helped me for so long turn on me suddenly? I can’t care about that part. There are doctors who try to answer those questions, but even they almost always say “don’t do that, then”.

It is not a perfect solution, but there are no perfect solutions. That’s kind of the point of chronic illnesses. You will never be perfect again, and if you want to do more than survive, you have to be okay with not being okay.

When you are in the thick of it, barely able to get through the day, knowing that will often save you in the moment, while knowing why will fix the underlying issue, if there is anything to fix.

Which is something else I learned.

There is often no fix.

There is merely a workaround you hope works long-term. Sometimes it does and sometimes it doesn’t.

Did square ads work last month? Cool. Maybe they will work again this month. Maybe something else will work tomorrow.

Maybe you’ll be running along just fine for years and suddenly Facebook will flag your account twice in a month even though nothing has changed and you have violated none of their rules.

I’m not saying you don’t need to know why, but why often stifles fixing that which is threatening to destroy us right now until we can figure out the deeper why.

I would be dead if I didn’t know why my thyroid levels were off back when I was 28. They put me on medication, which worked for a decade, and it saved my life.

It was a ticking time bomb, though.

Eventually, those thyroid drugs stopped working. Why did they stop working that day at that time? No idea. We always knew one day they might stop working, but there was no way to determine when that might happen.

When they did, it didn’t matter why. It mattered that.

After they stopped working, I had to get radiation on that thyroid, which killed it for good, but not before my thyroid tried to kill me one last time.

I didn’t know why I almost died that night last February and not any of the days before or since, but I sure knew that I was dying, which saved my life.

The why was critically important to my care, but it didn’t help much in my day-to-day life. Able-bodied people think knowing why your body stopped working correctly leads to a miracle where you never feel bad again…

…but that’s not the case.

Once you have your treatment plan, most of dealing with chronic illnesses is pain management and knowing what triggers you.

Knowing that you are in pain allows you to take action to mitigate that pain.

Managing an author business is a lot like having a chronic illness. You’re constantly looking for signs of distress, and making sure you are able to survive from one day to the next.

You test and you plan. You eat healthily and you exercise to keep the beating heart of your business healthy, but most of the time you’re trying not to kill it…

…and often it’s about knowing that certain things trigger flare-ups, even if you can’t pin down why.

If you go through your business life wondering why things happened to you and lamenting that it’s not fair, you’re missing the point.

None of this is fair. Good or bad, there is always a bit of randomness in everything. Your book is probably just as good as more popular books in your genre, and the only reason it’s not being read by more people is bad luck.

There is great luck in authorship, but there is also almost always a parasite threatening your business and trying to kill it off.

When you get sick, you have to control the fever first…because the fever can kill you just as easily, or more easily, than the parasite.

Lots of people die around the world because their body, while trying to fight the infection, creates internal conditions that kills them.

If you keep asking why without taking action, then you’ll fail to keep your business alive, and by the time you turn your attention to dealing with the that, you’ll have disrupted the ecosystem irreparably before you even have time to unearth the why.

But more importantly, there usually is no why, except that the universe is chaos, and we can only ever impose so much order into the system.

Why did a long-time reader stop reading? Maybe there is a reason you can fix, but often the best answer is just…because it happened. Even if you do everything perfectly, 2-5% of your readers will churn every year, many through no fault of your own.

Knowing that fact, if you want to grow you need to find at least 5% more readers every year, or you will shrink. Knowing that, you can take some action, even if you don’t know why.

It might not be perfect action, but it is often the imperfect action that saves your life or alleviates your suffering so you can try again tomorrow.

That is why you need to create multiple paths for success and have direct access to the most fans possible. It’s why you need to be set up on as many platforms as possible. It’s why you need the most control possible.

Once you fix the thing trying to kill you, then you can look at the situation and build better systems. The better your systems, the less risk you have day-to-day.

The cleaner your water, the fewer parasites you will have trying to kill you. Still, you can’t change the entire water system of your city at once, but you can boil water to save your health and your life right now.

It’s an imperfect solution that will save your life today, and allow you to deal with the deeper why tomorrow when you aren’t doubled over in pain.

The more redundancy we can build into our business, the less any one failure point can cripple us, and the more chances we have to catch the things that do go wrong, even if we don’t know why they go wrong.

Chronic illnesses are all about creating systems of protection to insulate you from those things that will throw you into a spiral. It’s about surrounding yourself with the kinds of things that will allow you to thrive and prevent your own body from trying to kill you.

I won’t lie. I had a nervous breakdown when Facebook deleted my account. I don’t mean that metaphorically. I meant I was sitting in front of my computer, babbling incoherently, and crying because I thought everything was over.

It was horrible and I felt my whole body crumbling under me. I don’t think I have ever felt that so acutely in my whole life.

My wife in her infinite wisdom somehow convinced me to go to bed, and the next morning I woke up with a fresh outlook…

…maybe it wasn’t so bad.

I own the buyer data for most of my customers and collect emails on my website. It’s the most important part of my business, outside of writing books. If I couldn’t connect with them, it would destroy everything tomorrow.

I also have a Circle community with the email addresses of everyone who has joined. I have a backup of every relevant Facebook post since 2015, and I have a book coming out with the best ones next month. Monica and I have a membership, and a conference, plus so many other ways to connect with our community that if any one of them tries to kill our business, we can pivot without losing everything.

I have contingencies upon contingencies built into my businesses. I insist on it, and while I often feel like a crazy person, I am also living proof that something is always out there trying to kill you.

You can keep your business healthy by maintaining a safe distance from the things you know are trying to kill you and creating systems with multiple redundancy layers so that when systems fail, and they will, your business doesn’t collapse in on itself.

As authors, we need to create an ecosystem that is robust, but there will always be randomness to it, and that randomness can kill your mental health if you can’t come to terms with the fact that the why might never be known, but you can always deal with the that.

I don’t know why my girlfriend cheated on me all those years ago and gave me mono, which threw my whole body into chaos, but I do know that it happened, and I know even better that there is no why to solve. There is only a that to manage.

I never talked to her again after she told me what she did, but I don’t resent her for it. Resentment is for healthy people. I don’t have time to wallow in why I was so unlucky, because if I resented one thing, I would end up resenting everything.

Instead, I get up and put one foot in front of the other, trying to make the best of the that which I have been given. These days, when I think of her in fleeting moments of memories long past, it is mostly to hope she has not suffered the same way I have for all these years.

If you told me all those years ago that one moment would define my whole life, I would laugh in your face. And yet, here I am.

Maybe you find that depressing, but there is great freedom in that for me, because for the most part, I can let the why float down the river out of sight and deal with the matter of that which keeps me alive to live another day.

The Author Stack sits at the intersection of craft and commerce, helping writers build more sustainable businesses that allow them to thrive while creating work that lights them up inside. We strive to give authors agency in a world that too often seems intent on stripping it away from them.

We have hundreds of articles in our archive, along with fiction and non-fiction books for paid members.

If you are not a paid member, you can read everything with a 7-day free trial, or give us a one-time tip.