The Life-Changing Lessons of My Rare Disease

Self-reflection. It’s a good thing, right? And if ever there was plenty of time for wholehearted soul-searching, it was 2020. But damn, this year needs to be over.

I’m more prone to immerse myself in the hunt for meaning when I’m headlong into a some sort of crisis (real or self-manufactured). Illness – acute or chronic – is a crisis, on both a physical and emotional front.

And while my health this year has been more stable than it has for the previous two, I didn’t anticipate the pandemic. No one did. It boldly dotted the “i” and crossed the “t” in the word “unpredictable” . Guess what? When you’re living with chronic illness, your world is already unpredictable.

Living with a chronic disease

I live with dermatomyositis, a rare autoimmune disease that affects 0.02% of the population. It’s an inflammatory disease that causes muscle weakness and skin problems, and it has significantly weakened my diaphragm, which has reduced my pulmonary function.

Many of us with chronic illnesses have compromised immune systems and other health conditions. Translation: We’re at higher risk for COVID – and for more severe cases.

So here I am at home. I don’t recall ever spending so much time in my house as I have this year. Sooooo much time to think – and I’ve learned so much. Here are just a few of the life-changing lessons.

Five life-changing lessons I learned from my disease

1. Don’t expect people to understand what they can’t see

For many of us, our chronic or autoimmune diseases are largely invisible to others. On the one hand, yay! Who wants to stand out in a crowd simply because they look as though they are ill or struggling? But the truth is that we want people to understand that we’re not pretending or hiding behind a “fake” condition.

Let it go. To a degree, it’s human nature. We’re all of the mindset that “we’ll believe it when we see it.” But we also know that just because we can’t see things doesn’t mean they don’t exist.

2. Living with chronic illness has a lot in common with living in a pandemic

I often muse that the only predictable thing about my disease is that it’s unpredictable. Much like 2020. We’ve traversed a spectrum from “a few weeks to flatten the curve” to “now there’s a new variant that is 70% more transmissible!”

If you’ve been living with chronic illness, recognize that you’re far better equipped emotionally to negotiate the mental twists and turns of not knowing what to expect. Pandemic or not, we’re all living in a constant state of flux and uncertainty – it’s just that when we’re chronically ill, we know it and we learn how to cope with it.

3. Gratitude is a gift you give yourself

This may be the most life-changing lesson I’ve learned this year: practicing gratitude is a choice – and when we choose to do it, we are giving ourselves a gift. What are you grateful for? In spite of everything, I am grateful for so much this year!

Make a list. And every night before you go to bed, think of at least five things you are grateful for. Need some inspiration? This article from mindful.org suggests a number of ways you can practice gratitude.

4. Your emotional health and physical health are inextricably linked

The state of our physical health can influence our emotional health – just as our emotional health can influence our physical health. Being in a state of constant stress predisposes the body to illness. We owe it to ourselves to be honest about what we need to do to nurture our emotional well-being.

Each of us is unique – we have different thresholds for pain and for stress. Make it a point to become aware of your stressors – and how you can reduce them – and then do it. Establish your boundaries and guard them closely. Take care of your emotional health.

5. I’m still me… but better!

Do you remember when you learned that your disease can’t be cured? That’s the nature of chronic illnesses and autoimmune diseases. They can be “managed” but not cured.

I know that my life is different now. And while I wish I was completely healthy, I also know that I have grown in ways that make me better.

We’re afforded a perspective that can benefit us, training our attention toward gratitude, simplicity and authenticity.

When we are no longer able to change a situation, we are challenged to change ourselves.

Viktor Frankl

I recently read Viktor Frankl’s “Man’s Search for Meaning”, a book he wrote chronicling his imprisonment in concentration camps during World War II.

The second half of the book outlines his psychotherapeutic method, which, interestingly, doesn’t focus on the past, it focuses on the future.

That’s what we need to do – focus on what lies ahead, on just living forward.

What life-changing lessons have you learned from your illness?