Be Bold, Be Brave... My Story Living with Chronic Illness

Let’s just get this out of the way right now: there is no upside to chronic pain or chronic illness. None.

The fact that I’m even sitting down to write this feels monumental. How long it will take me to finish is anyone’s guess. The energy required just to exist with an invisible illness is unfathomable to most people and instantly recognizable to others. Writing about it adds to the fatigue, forces reflection, and makes me focus on parts of life I’d often rather ignore—but here we are.

Living with one chronic illness that doctors fail to acknowledge, properly diagnose, or care to treat is daunting. Living with several can feel downright defeating. This is why depression and anxiety are so common in people living with chronic pain and invisible illness. Fibromyalgia, IBS, autoimmune conditions—the statistics vary, but the story doesn’t. I’ve read that 75% of fibromyalgia patients are severely depressed by diagnosis. I’ve seen numbers as high as 84%! IBS boasts similar rates. I’ve even had two teachers take their own lives under the weight of debilitating illness. This is not rare. It’s heartbreakingly common.

I’m telling my story because I have a point to make. Actually, I have several points, but we’ll keep the can of worms partially closed.

Over the years, I’ve been diagnosed with adenomyosis, degenerative disc disease, bursitis, arthritis, fibromyalgia, IBS, and isolated polycystic liver disease (PLD). PLD is considered rare and, according to the textbooks, is “presumed to be asymptomatic.” Oh how I wish that were true! In my case, it absolutely has symptoms—and to make things even more fun, mine isn’t genetic. Should I be flattered by my rarity?! Maybe I’ve been looking at this all wrong! (Kidding. Mostly.)

By age 44, I had already had the left lobe of my liver removed, multiple cysts treated surgically, and my gallbladder taken out “while they were in there.” Add to that a hysterectomy, spinal fusion, jaw reconstruction, and more IBS diet changes than I knew existed. Big deal, right?

Ask me how many decades of isolation, confusion, pain, and sheer exhaustion it took to find physicians willing to give me the time of day.

I’ve had doctors raise their voices at me. One told me there was nothing wrong. Another insisted my skin issues couldn’t possibly be liver-related because that was “nonsense.” One outright refused to refer me to a liver specialist, comparing it to “asking a car mechanic to fix a washing machine.” (I’m still confused by that analogy.) To me, that’s like telling a cancer patient they don’t need an oncologist.

I could write entire chapters on the lack of compassion, empathy, and care I’ve received—and the tears that came with it—but I don’t have the energy, and honestly, it’s not a healthy place to live. Sadly, I’m not alone. I’m also not a worst-case scenario. And that should terrify all of us.

So yes, it may sound like I’m banging down doctors’ doors and whining 24/7—but keep in mind, this has unfolded over decades. I endure a lot before making myself vulnerable enough to ask for help again. Some of my lowest moments came not from pain itself, but from being ignored.

All that said (and this matters), I have also had phenomenal doctors. Recently, I FINALLY encountered physicians who were willing to take a close look, ask questions, and say something that changed everything: What can I do to help?

Cue the clouds parting. Sun rays. Blood pressure dropping. Trembling stopping. Tears welling up. I felt safe. That matters more than most people realize.

As a disabled veteran, I also need to say this: my local VA team has been amazing. Not the VA as a whole—they’ve earned their reputation—but my team listens. When I say something is wrong, they pay attention. They advocate alongside me. That’s not something I take lightly.

And no, I don’t run to the doctor at the first sign of discomfort. In 2016, my L3 herniated while my husband was deployed and I had three kids at home in the dead of winter in Montana. I was crawling up stairs, falling on the way to the bathroom, and convinced I might die from the constant electrocution running through my body. After three ER visits and three denied MRIs, my sister—who works in radiology—literally wheeled me out of an appointment and into an MRI scanner. She told the scheduler, “This is getting done today!” and clocked out of work because I needed her more than they did.

The imaging showed it was bad. Suddenly, everyone softened.

I’ve never told this story publicly before, and I’m still leaving out so much—the hospitalizations, infections, feeding tubes, scars, loneliness, insecurity, pain. The loneliness. That part deserves its own paragraph. But here’s the truth: despite all of this, I do not live in despair.

I attribute that entirely to my faith.

I refuse to be defined by my diagnoses. Ecclesiastes reminds us there is a season for everything. This is my season. I want to feel beautiful in a body that changes. I want to show up as a wife, a mother, a business owner, and a contributing member of my community. I want others living with chronic illness to believe that is possible for them too.

I may need a liver transplant someday. I’m currently advocating for specialized care at Mayo Clinic with a physician who has dedicated her life to studying PLD. I’m hopeful. And even if the road ahead is uncertain, one thing is not...

Giving up is not an option.