What No One Tells You About Having a Chronic Illness

I never missed a day of school.

Never had a cold or flu.

I was the one person everyone could count on to show up.

So in my 20’s, when I started having trouble with my joints, it came as a shock to learn that I had an autoimmune disease…a rare one.

When the shock wore off, I scrambled to find out more about this strange and unusual condition.

Before I set off on my research safari, I had three full pages of questions. At the top of the list, what did I do wrong?

Somehow, I believed I had done something, failed myself, or my God to have been afflicted in this way.

I quickly learned that most chronic illnesses (although not all) fall into the category of autoimmunity and there’s no known reason why one person gets sick while another doesn’t.

They have some assumptions like, DNA, family history, the environment but there’s not enough conclusive evidence to pinpoint one main cause.

Despite having research papers and notes from talks with my doctors, confirming I had done nothing wrong, I still felt like I was being…punished.

Thing #1 No One Tells You: What Your Eye Sees

For years I felt like I was wearing a scarlet A on my chest that everyone could see announcing the bad deed I’d done to have this disease. What I didn’t see then was that the only one blaming me, was me.

If we could change the molecular structure of our insides, no one would be sick. There’d be no cancer, no Lupus, no illness of any kind.

And while bone broth, prescribed meds and Ayurveda can sometimes help you feel better, your cosmic partner (because it feels like a ‘till death do us part’ arrangement you didn’t sign up for) still leaves traces of itself in your markers.

Self-blame and self-punishment is a natural by-product of being delivered devastating news.

But believing that your chronic illness is a life-sentence begets more devastation.

Without intending to, you create a merry-go-round of emotions all pointing to a dark, bleak future. I lived there for many years. It’s cold, damp, void of hope.

The remedy?

Keep your eye focused on the here and now.

Look around you and seek out the positive. The soft paw of your beloved pet. A warm caress from your significant other. The burst of sweetness from your favorite ice-cream.

The little things, the things we sometimes take for granted, are what comfort, ground and support us. It’s true when you have a chronic illness, and even when you don’t.

Thing #2 No One Tells You: You Hold the Pen

I had a friend with cancer. She was smart, funny, caring. A former television journalist, she left her corporate career behind to become a business coach and she was brilliant!

When I found out she had cancer, I didn’t know what to say. There’s no advice column sentiment that feels worthy, you know?

During our last conversation, I told her how brave she was. She laughed and said that I was the brave one.

This confused me.

She went on to explain that she already knew how her story would end but I didn’t. I had to learn to befriend the very thing I resented.

My beautiful friend (may she RIP) was right. A death sentence is an end. A period with no opportunity to rewrite another scene.

While scary, inconvenient and frustrating, a chronic illness is very different because it’s an opportunity. An opportunity to pivot, change gears, re-asses.

Whatever you’re comfortable calling it, it’s a chance to rewrite your story.

Sure, you may have a cast of characters you didn’t ask for, you may feel like punching strangers for no other reason than they looked at you funny, no matter how you feel you still hold the pen.

What happens next, is mostly, up to you.

Thing #3 No One Tells You: A Bet You’ll Never Lose

My illness, Sarcoidosis, follows a pattern. Two years active, then it inexplicably goes dormant.

The pattern skipped me because 10-years in, my condition grew worse. I’d always wanted to be special but not like this…

For reasons I can’t entirely explain, I went from self-blame, to acceptance, to shame.

Most people go back to living a “normal” life after two, sometimes three short years.

But not me.

My situation no longer felt chronic, it felt like a life sentence of pills, infusions and a well worn path to the hospital.

When the inflammation in my body reached a boiling point, when I could no longer meet clients (in-person or on the phone), when I lost the ability to use my hands, I closed my brand agency.  

My normal was no more and I felt like a failure.

Was I the only person that couldn’t make life work?

And that’s when I was brought face-to-face with shame.

What I didn’t understand at the time was that deciding to put myself first wasn’t an act of failure, it was an act of courage.

I had no clue how many people made their life work under similar circumstances, still don’t. But giving my body a fighting chance was the bravest act of self-love I’ve ever performed.

Looking back, if I had to do that part of my life over again, I’d still choose me. Choose you, always. It’s a bet you’ll never lose.

(one more thing no one tells you about having a chronic illness)

 Thing #4 No One Tells You: What Matters Most

One day, while waiting for my number to pop up on the screen announcing my turn at the blood draw chair, I overheard a conversation (okay, I eavesdropped) that shook me.

He looked to be in his mid-40’s. A surfer dude type. He was waiting for an elderly man I later assumed was his father - they had a similar bone structure.

The hospital has a strict no cell phones policy but surfer dude didn’t get the memo. He was feigning an apology to the person on the other line. Something about misplacing a date and forgetting.

After a few “uh huh's” he pushed a button on his phone and said “whatever.” Then, he proceeded to play one of those phone games with loud beeping sounds. Not a care in the world.

It’s a moment that, on the surface, seems insignificant except that it had significance for me…

This dude upset someone.

Did he get fair treatment for his oversight?

I don’t know. Doesn’t really matter though because what stood out to me was his lack of concern towards someone he clearly hurt, his whatever comment said so much...

In that moment I realized that no matter how ill I was or would become, no matter how sad or angry or filled with sorrow, and no matter how gnarled or disfigured my joints and skin would grow, I had empathy.

It’s not my intention to sound judgey, in case that’s what you were thinking. It’s just that I don’t believe in coincidences and I’m convinced surfer dude and his phone performance, were sitting across from me that day for a reason…

To demonstrate that my self-shame was a facade. A figment of my imagination.

No matter what the majority’s pattern looks like.

No matter how others choose to treat me.

No matter how many years my cosmically arranged (chronic) marriage would last, I was still the same where it counted, on the inside.

Chronic illnesses, death sentences and unforeseen trauma changes us. It always does. But our core? The essence of what makes me different than you and you different than someone else, that remains unchanged.

Dare I say it becomes enhanced, like a superpower you didn’t know you had.

At this point, you might be thinking “but Liz, my situation is worse than yours” or “but Liz, I can’t see my life being any better than this” or “but Liz, your words are sweet but I’m in real pain and words won’t help.”

I understand.

I’m going on a 30-year relationship with Sarcoidosis. Doctors from Harvard, UCLA and Stanford are still scratching their heads over my case.

As a chronic illness veteran, I can tell you that the road ahead for you may look very different than mine.

No matter how your journey unfolds, it’s a challenging road to travel. No doubt.

My intention in writing this post isn't to belittle your situation, wave a judgmental finger or throw my pom poms in the air.

It’s to share this one message…

What no one tells you when you’re diagnosed with a chronic illness is that you have two choices. Rise or Fall.

I fell. A lot.

Until one day, I stood on my own two feet, learned to make peace with my cosmic partnership and appreciate life. Some days I stumble - even after all this time - but I always manage to get my bearings.

Ultimately, whether you live with chronic illness or you’ve been dealt a more life shattering blow, appreciation is our saving grace. It may not cure us but it definitely heals.

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