Living with Chronic Illness: Fighting the Monster

Labels are strange. Maybe it’s the Aquarius in me, but I’ve never been a fan of boxes. “Normal” has never meant anything to me, other than being a setting on a dryer. People are far too complex for oversimplification. But there it was: a certified label stamped boldly on my medical file—Hypermobile Ehlers-Danlos Syndrome (hEDS).

After years of medical gaslighting, misdiagnoses, and countless tests, I finally had an answer. Relief mixed with devastation because, while I wasn’t “crazy,” chronic means forever, and degenerative means it will get worse.

At least I knew the monster’s name. And the monster had friends: Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Chronic Fatigue Syndrome (CFS). Knowing their names gave me something to fight—something to plan against.

Chronic Illness: A Trickster Monster

Chronic illness is tricky because it doesn’t look the same for everyone. My symptoms range from random bouts of breathlessness, insomnia, and fevers to full-body pain and debilitating fatigue. Some days I can take on the world (thanks, ADHD energy bursts). Other days, getting out of bed feels like climbing Everest.

The hardest part? How it sneaks up when I least expect it. Fear of having a panic attack in public sometimes causes a panic attack. Thanks, PTSD. Add agoraphobia to the mix, and socializing or running errands feels impossible.

Each flare or crash leaves me feeling like I’m failing—trapped in an internal prison where my body and mind wage war. Still, I remind myself there’s a silver lining, even if it takes a little extra effort to find.

The Inconvenience of Illness

Let me paint a picture: Waking up surrounded by firemen might sound dreamy, but for me, it was a nightmare. One minute I was out shopping with my toddler; the next, I’d fainted from a POTS episode. Imagine being eight months pregnant, your two-year-old terrified, while strangers whisk you into an ambulance.

That’s the kind of chaos this monster causes—turning everyday tasks into battles. Grocery shopping, school volunteering, even just getting dressed can leave me breathless and in pain.

But life doesn’t stop for illness. Between doctor appointments, therapies, raising kids, volunteering, and trying to write a book, it’s felt like juggling flaming swords. This whole thing is the epitome of Ain’t nobody got time for that.

Coping with Judgments and Stigmas

People love unsolicited advice. (Spoiler: I’ve tried yoga, juice cleanses, aromatherapy—you name it.) And the outside world? They see pajamas, messy hair, and exhaustion and assume I’m lazy.

I’ve learned to let go of their judgments, but it’s not always easy. Internalized ableism is a beast all its own. Some days, I feel guilty for what my illness puts my family through. But I also know this: disabled doesn’t mean weak.

I’ve become a fighter—not just for me but for my kids.

Parenting While Chronically Ill

Parenting is hard. Parenting two kids with disabilities while battling chronic illness? It’s a Herculean feat.

I’ll never forget the day my daughter, after another eye surgery, asked me, “Why is this happening to me?” I didn’t have a wise answer. I just said, “I don’t know. Some people have extra obstacles, and it’s not fair.”

But I’ve realized that this experience gives me a chance to teach my kids what resilience looks like. I want them to see me struggle, fight, and sometimes even win—and know they can do the same.

Why the Fight Matters

These battles, as exhausting as they are, shape us into something extraordinary. They teach us how to weather storms and laugh in the face of thunder. One day, when others face their own monsters, I hope my kids—and I—can hand them the tools we forged in the fire.

Because life isn’t fair. But it is worth it.

I may have a chronic illness, but it doesn’t have me.

---

Helpful Resources for Chronic Illness Warriors

Here are some tools and resources that have helped me manage life with chronic illness:

• The Ehlers-Danlos Society: A comprehensive resource for those with EDS and related disorders.

• Calm App: Guided meditations and mindfulness exercises for mental health support.

• Heating Pad Therapy: A simple but lifesaving tool for pain management.

• The Mighty: A supportive online community for people with chronic illnesses.

What resources have helped you? Let’s build a list together—share your go-to tools in the comments.