The Catch-22 of Chronic Illness

You know how people talk about “getting back to normal”?

For those of us with chronic illness, normal is the mirage we keep chasing, the thing that always seems to disappear just as we think we’ve caught it. Every time I think I’ve found a rhythm or my body starts to stabilize, it’s like the universe taps me on the shoulder and says, “Not so fast.”

I went back to work on September 28th, full of hope that maybe, just maybe, I could hold it together this time. But within days, the familiar chaos hit: missed shifts, flare-ups, and the constant guilt of feeling unreliable, not because I don’t care, but because my body won’t let me keep up. One day it’s my stomach keeping me hostage in the bathroom for 45 minutes at a time; the next, it’s nausea so violent that vomiting feels like the only relief I can find. If it’s not that, it’s my back seizing up or my hips locking to the point I can’t stand. The only position that gives me a sliver of relief is lying on my side, which obviously doesn’t pair well with taking phone calls for 10 hours straight.

And as if that weren’t enough, my eyes have decided to join the rebellion. I was born with a severely underdeveloped optic nerve in my right eye — no real vision there, just shapes and fuzz. My left eye has carried the weight for my whole life, and now even it’s starting to fail me. The blurriness, double vision, random swelling; it’s all been getting worse since the pandemic. I’ve had moments so terrifying that I’ve genuinely thought I might lose my sight altogether. My long-time eye doctor, who’s known me since I was eleven, gently told me these symptoms could be connected to dysautonomia or Ehlers-Danlos syndrome — 2 conditions that fit far too many pieces of my medical puzzle. And while that validation feels like a step toward understanding, it also brings this sobering reality: that what I’m living with may not ever go away.

 

 

 

The Vicious Cycle

 

Chronic illness is a loop that keeps spinning, no matter how hard you fight to get off. You rest, you recover, you try to rebuild your life — and just as you start to find your footing, your body pulls the rug out from under you again.

Going back to work isn’t just about showing up; it’s about gambling with your health. You push yourself because you need the paycheck, the benefits, the stability, the very things that make surviving your illness possible. But pushing too hard is also what lands you back in bed, staring at the ceiling and wondering how you’ll make it through the next flare. It’s this constant Catch-22: you can’t afford to stop, but you can’t afford to keep going either.

Even when you have a supportive employer, that fear of “too many call-outs” lingers. What if this time, understanding runs out? What if I lose not just my job, but my access to the care that keeps me functioning? The stress alone can send your symptoms into overdrive; heart racing, pain spiking, gut in knots. It’s an endless feedback loop of stress causing flares, flares causing absences, absences causing stress.

And as if my body wasn’t already throwing darts blindfolded, it decided to add my menstrual cycle to the mix. After not having a period since August, my body decided to make up for lost time this month — and it came in hot. When you have endometriosis, adenomyosis, and PCOS, your period doesn’t just “show up.” It barges in like the devil came back and decided to throw a 3-day Woodstock festival in your uterus to announce it.

This last round hit on the 11th and had me down for nearly four days. My right hip was locked so tight I was hunched over like the wicked witch from Snow White (you know, the one with the apple?) and of course, I’d left my cane behind at work, so even getting around the house was an Olympic event. I get so sick when my period hits: fevers, chills, nausea, full-body aches from scalp to toes, and cramps so deep I can feel them echoing in my kneecaps. It’s like my body’s monthly reminder that if my chronic illnesses don’t get me, my hormones might.

And that’s the hardest part: if it’s not a flare-up from one condition, it’s another tag-teaming in to take its place. There’s no real break. Just shifts in which system decides to act up that week.

The Emotional Toll

 

People think chronic illness is just about being sick, about symptoms and doctor visits and medications. But it’s so much more than that. It’s the slow unraveling of everything you once knew about yourself.

When your body constantly betrays you, it chips away at your confidence, your independence, your sense of purpose. You go from being the person who could do anything to the person who has to cancel plans, call out, or say, “I’m sorry, I just can’t today.” And no matter how understanding the people around you try to be, you still feel like a burden.

The hardest part is how it changes your relationships. Your partner: your best friend, your lover, your equal, becomes your caretaker. They start handling the responsibilities you can’t, carrying the emotional and physical weight you used to share. And even when they do it out of love, it shifts something between you. Intimacy becomes survival. Laughter turns into fatigue. The person who used to make you feel unstoppable now has to hold you up when you can’t stand, literally and figuratively.

And then there’s the guilt. The kind that creeps in when you see them exhausted, or when you cancel plans with friends again, or when your family sighs softly on the other end of the phone. It’s a lonely guilt that doesn’t fade, even when people tell you it’s not your fault.

Because deep down, you still wish you could be who you were before.

 

 

 

Learning to Give Yourself Grace

 

If I’m being honest, I’m not very good at giving myself grace. I’m great at reminding everyone else to; I’ll tell my friends, my group members, my readers, but when it comes to me? I’m relentless.

I’ve spent years convincing myself that my pain was normal. That my exhaustion was just the cost of being a hard worker. That everyone else was just better at handling it. That I’m a pansy and weak. It’s a kind of self-gaslighting that so many of us with chronic illness fall into;  minimizing our symptoms so we can keep functioning, until our bodies finally slam the brakes and force us to listen.

When you’ve been living in survival mode for decades, it’s hard to accept that rest isn’t weakness. That your body isn’t betraying you; it’s begging you to care for it. And still, even knowing that, the guilt of slowing down hits hard — especially when bills pile up, work piles up, and expectations don’t stop just because your body does.

What makes it harder is being a neurodivergent on top of it and living with a neurodivergent. Having ADHD and autism adds a whole extra layer of chaos: sensory overload, executive dysfunction, emotional intensity. Trying to manage all of that and chronic illness? It’s like juggling knives during an earthquake. You drop one thing, and suddenly everything feels like it’s falling apart. For both you and your partner. 

But even in that chaos, there’s power in awareness. In choosing to stop fighting your body long enough to listen to it. In allowing yourself to say, “I’m doing my best and that’s enough today.”

Because the truth is, living with chronic illness is not about giving up. It’s about learning a new way to exist. A new normal that doesn’t look like anyone else’s, but still holds value, beauty, and strength.

 

 

 

The Hard Truth and the Hope

Chronic illness changes everything. It changes your schedule, your plans, your relationships, your sense of self. But maybe the goal isn’t to get “back” to normal. Maybe the goal is to build a life that fits the version of you who exists now, one that honors your limits, protects your peace, and still leaves room for joy, laughter, and connection.

 

Because we may not get to choose the bodies we live in, but we do get to choose how we show up in them.

And if you’re reading this while fighting your own invisible battle, I want you to know something: you’re not lazy. You’re not broken. You’re not failing. You’re surviving something most people can’t see and that takes a kind of courage that deserves to be honored.

 

 

 

Let’s Talk About It

If this resonated with you, I’d love for you to share your story in the comments or tag me on social. Whether you’re navigating your own diagnosis or supporting someone who is, these conversations matter: because none of us should have to fight invisible battles alone.

XO, Ashley Jo 💋