Four Big Mistakes that Chronically Ill People Make

I’m stuck. You probably know the feeling – the ongoing sense of being completely trapped at worst, or at best, feeling suspended in a state of inertia. I’m not moving backward but I’m sure as hell not moving forward.

It would be simple to blame this on the chaos that has defined 2020. After all, we’ve been ensnared in the grip of a triple threat: pandemic pandemonium, cultural chaos and political turmoil. I’m pretty sure I’ve thrown my hands up in the air a number of times, while exclaiming that “I just give up!”

But the truth is that while this year’s mayhem has impacted our mental health, I can’t lay the blame for my “stuckness” there. Because it’s my own fault.

Our journeys with chronic illness are as individual and nuanced as we are. And our paths to managing our health and our healing are rarely linear.

I’m always thinking (actually I’m always overthinking), trying to make sense of my world and my place within it. You’ve probably done this, too. If so, you’ve learned that you can’t make sense of anything without being honest with yourself.

That soul searching has led me to recognize that I’ve been making some big mistakes that contribute to this feeling of perpetual stuckness.

Four Mistakes That Chronically Ill People Make

Trust me – I know that there are more than four. And I realize that not all of these apply to everyone. These are my biggest mistakes.

Are you making them too?

1. Losing sight of your top priority

If someone asked you what your top priority is how would you answer that question? Many of us (myself included) would – and without any thinking required – say that it’s our family.

Would you be shocked – or would you judge my character – if I told you that you’re wrong?

Your first priority is your health (both physical and mental). Because if you are not managing your chronic illness and your emotional-well being, you won’t be in the optimal position to take care of your family emotionally, physically, or otherwise.

2. Not recognizing when your routine needs to change

I’ve fallen into an unproductive set of behaviors. Which is another way of saying I’ve succumbed to some bad habits. I’m sure I’m not alone. All things considered, this might be one of the biggest mistakes that chronically ill people make because it can negatively impact every area of our life.

The funny thing is that these behaviors aren’t inherently bad. We typically put routines in place with intention, to meet a specific need. But inevitably, things change (whether we want them to or not) and yet we’re still operating on auto pilot, forgetting that sometimes a course correction is in order.

One of the biggest challenges of many chronic illnesses is the ebb and flow of symptoms and unpredictable set backs and progress.

The first six to nine months or so after my diagnosis of myositis, I suffered from weakness and fatigue. I structured my routine to accommodate my needs – to protect my fragile immune system, ensure that I got enough rest, reduce my stress level and undertake light physical activity.

It took months for the treatment to produce noticeable effects, and as I felt better I found myself gradually reverting to my previous lifestyle. I didn’t consciously try to adjust my routine. That was a mistake.

As a result, I’ve lost sight of balance. I’m not getting enough physical activity – I’m sitting too much because I’m working too much (at what was designed to be a “part-time” job). This has created stress which feeds my anxiety. There are nights when I just can’t sleep – and that leaves me fatigued for days after.

Pay attention to what you’re doing everyday. Are you honoring your physical and emotional health? You’ll need to make a conscious effort to design your “new normal”.

3. Assuming that modern medicine has all the answers

This is another big mistake that chronically ill people make. We want to believe that if we find the right doctors and follow the prescribed treatments we’ll get good results.

Maybe. But maybe not. Chronic illnesses and autoimmune diseases are complicated. We’re rarely seeing just one doctor. It’s more likely that we have a team of specialists. Some treatments are off-label uses of drugs initially developed for other conditions.

I’m not suggesting that we should forego modern medical treatments for alternative ones. It’s safe to say I’d be dead had I gone that route. What I am saying is that it’s in your own best interest to learn and to question so that you can advocate for yourself.

Research the available treatments. Talk to your doctor but never be shy to ask for a second opinion. Talk to others who have the same condition you have – you’ll get the benefit of learning about various treatment options as well as brutally honest experiences with side effects.

Consider an integrated approach to your care – how does your diet and lifestyle affect your condition? Trust your gut – there are times when the risks of a drug truly do outweigh the benefits. And don’t forget that your mental health is just as important as your physical health.

4. Believing that you’re “defective”

This is another one of the big mistakes that chronically ill people make. Choose any word you like – defective, “less than”, not good enough, damaged, useless. I’ve felt all of these to some degree at different times.

Your measure of health does not determine your worth. No one’s life is perfect, although the harsh reality is that some people do have it easier than others. The one universal truth about life is that it’s not fair. But that doesn’t mean that it’s not beautiful or magical or worth living.

We’re simultaneously blessed and cursed with social media. On the plus side, we can easily connect with others whose lived experiences parallel ours, and we find comfort and discover coping tools that help us navigate the zigs and the zags of chronic illness.

But the downside is that we are bombarded with highly curated versions of the lives other people live. We’re seeing a snapshot or the single frame of a film – where people appear to be doing so much better than we are. But what we’re not seeing are the outtakes on the cutting room floor.

Our emotional bandwidth isn’t static. Sometimes we recognize a mental toughness that we didn’t realize we had. While at other times we struggle to accept that we should play the hands we’re dealt because folding isn’t really an option.

I’m not much of a card player, but I’ll heed this advice from professional poker player Sammy Farha : “Just play every hand. You can’t miss them all.”