Half Full: The Hidden Upsides of Chronic Illness

Have you ever been asked if you’re a “glass half empty” or “glass half full” type of person? I’ve never thought of myself strictly in terms of being optimistic or pessimistic. I choose to think of myself as realistic.

I’ll dig pretty deep to find the facts, factor in a healthy measure of skepticism, and then acknowledge that sometimes no one can predict what’s going to happen (take 2020 for instance).

So I never anticipated that I’d find the hidden upsides of chronic illness.

I can’t say I went looking them for them. But they found me. Not as soon as I would have liked for them to, but they did.

Some chronic illnesses announce themselves with an acute onset. Others are far more stealthy, sending in their troops for a more leisurely invasion. So slow that it seems they may not advance for days, weeks or even months – but then suddenly they’re there. And there’s no going back.

Because chronic illnesses and autoimmune diseases are typically very complex, it can take years to get diagnosed, and quite a bit of time to find a treatment plan to help manage the condition. In retrospect, I had been having symptoms of myositis, a rare autoimmune disease, for about two years before I was finally diagnosed.

We have no choice but to learn how to cope with the physical and emotional impacts of chronic illness.

How do we do it? The only way we can – one day at time. Three steps forward and often times, two steps back.

When we’re chronically ill we ride a shifting wave of emotions that vacillates between hope and despair.

For the first six months or so after I was diagnosed with myositis I had a lot of downtime. Physically, nearly everything required a seemingly colossal effort. Myositis causes severe muscle weakness, fatigue, pain, swelling and difficulties with breathing and swallowing.

It’s pretty safe to say that if someone had tried to tell me about the hidden upsides of chronic illness, I wouldn’t have believed them.

I struggled to dress myself. I struggled to lift anything heavier than a coffee cup. The disease caused so much weakness that I wasn’t strong enough to cough.

So I spent a great deal of time thinking and figuring out how to reconcile the hand I was dealt with the life I wanted to have. And I knew that it couldn’t exactly be the life I had before.

It’s been two years since my diagnosis and I’m doing really well physically – thanks, in large part to medical treatment. But I’m also doing well emotionally – because I was forced to make choices.

Three hidden upsides of chronic illness

As it turns out, I feel as though I’ve taken the proverbial cards I was dealt and played them pretty damn well. The choices I made turned out to be a gift to myself – and you can make them, too. So while chronic illness does indeed suck, here’s what I’ve found:

1. It compels us to create balance in our lives

If you’re chronically ill, you may have finally admitted to yourself that you can’t do everything you used to do. And if you try, there’s usually a pretty hefty price tag that accompanies it.

By the time I was diagnosed with myositis my health had been on a steady decline for a couple of years. Even though I had been pushing myself to try to function as usual (but failing miserably!) I had missed more time at work in a year or so than I had over the past ten years combined.

Have you tried to push yourself, too? If so, you’ve probably paid for it.

You can’t do it all. You can’t be all things to all people. And the hard truth is that you never could do it all anyway – no one can!

I knew that I wanted to work (and financially I needed to). But I also had to admit to myself that I couldn’t (and wasn’t willing to) work a full schedule. So I decided to become part-time. And while there are still occasions where I do work more, I have much more control over my schedule – and more free time.

For months everyone has been working from home because of the pandemic. Although we are now able to go back into our office, we still have the option of working remotely. And while I do miss physically seeing my colleagues, my commute has been reduced to the few steps it takes me to get situated at my desk tucked neatly into the corner of our living room.

I don’t have the income I used to have. But that’s okay. I’ve always lived a fiscally conservative lifestyle anyway, so I’m managing okay. By the way, one of the other hidden upsides of chronic illness is that it often helps us recognize what we really need and what really makes us happy. (Hint: those things typically aren’t about money.)

2. Chronic illness gives us the opportunity to let go of perfection

I’ve always been a perfectionist. And I’ve wondered why it’s often not considered to be the ideal trait that I think it is. Now I understand (kind of, anyway).

I’ve had to let go of my pursuit of perfection- in certain areas, anyway. I just don’t have the energy. And I’ve learned that for the most part, other people aren’t looking for perfection.

As I write this I fully acknowledge that my house could use some cleaning. With two dogs and cat, it’s not uncommon to see some tufts of dog fur floating down the hallway. Or a cat lying on the kitchen counter because she likes the warmth of the dishwasher when it’s running.

The laundry? I just put last week’s laundry away this morning. It’s been one of those weeks.

I can’t easily do the some of the deep cleaning I’d like, so I rally the troops (my kids and my husband) to help. But we’re all busy and we’re doing the best we can.

Years ago (when I was healthy) and when my girls were in daycare, I was working full-time. Instead of taking an actual vacation, I’d take a week off just to deep clean my house, get organized and have some semblance of a break from a busy lifestyle. I won’t be doing that again.

I still enjoy those rare occasions where the house is completely clean and everything is in order (except the shoes – why do they have so many pairs of shoes?!) – but I’m no longer willing to sacrifice my time and my energy for it.

3. It helps us be more attuned to managing our physical and emotional health

How many doctors’ appointments do you typically have in a year? Quite a few, I’m guessing. I wish it were otherwise. But the reality is the frequent appointments, combined with ongoing symptoms (because when you’re chronically ill you rarely feel 100% “good”) make us hyper-focused on our health.

I used to think that the constant focus on the state of my health was a bad thing. But there’s a hidden upside: it’s given me the opportunity to become really aware of my relationship with myself – body and mind.

I’ve become completely compliant with all of the recommended health screenings (something I wasn’t always so good about). Because I have my blood drawn so frequently, I started paying closer attention to the results and looking for trends – especially in areas that I can control such as sugar and sodium intake, cholesterol, vitamin D, protein and iron. My autoimmune disease affects other blood markers, so I monitor those as well.

Having more information and paying more attention to my body has given me a sense of a little more control. I can ask more informed questions. I can monitor how I feel and then consider any lifestyle issues that might be playing a role so that I can avoid triggering a flare.

This vigilance also reminds me to nurture my emotional health. Stress can be a trigger for many chronic illnesses. Part of managing our chronic illness is taking time for self-care.

For all of the downsides to chronic illness (and there are a lot), the upsides seem to boil down to this: chronic illness gives us permission. It gives us the license to make changes to our lives and to our relationship with ourselves so that we can live more authentically.