Living With Chronic Illness-Rika’s Story

living with chronic illness
Part of being chronically ill are the many visits to the doctor.

Some days, just getting out of bed feels like climbing a mountain, except the summit is nowhere near in sight and the only view you get is joint pain, exhaustion, and stomach cramps. That’s what it’s like living with Lupus and Crohn’s Disease.

Being diagnosed with chronic illness

When I was diagnosed with Lupus in my late 20s, right after I’d just come through cervical cancer, I thought life had already thrown enough curveballs, as I already knew I had arthritis too. But then, Crohn’s Disease showed up a few years later, as if my body wasn’t already busy enough fighting itself. My immune system felt like a rebellious teenager, making decisions that made no sense, attacking its own organs while trying to destroy my ability to enjoy anything. Truly, living with even one autoimmune disease is like navigating a maze of symptoms that never seems to end—medications, infusions, strict diets, and endless doctor’s visits become part of the routine.

Lupus isn’t just about being tired all the time. It’s a constant mix of joint pain, fatigue, and damage to multiple organs—an unpredictable storm that can strike when you least expect it. And Crohn’s? Well, that’s a whole other nightmare, bringing relentless gastrointestinal distress that can turn even a simple meal into an unfortunate game of “Will this make me sick or not?”

balancing chronic illness
Chronic illness is a balancing act every day. Somedays you can explore the world & others you're exhausted.

Balancing chronic illness

So pretty much every day feels like a balancing act. Mornings often start with my body aching, my energy tank hovering near empty, and a brain that can’t quite seem to wake up. I’ve learned to listen to my body—tuning in to the signs of a flare-up, and the unpredictable nature of both conditions. On good days, I can make plans with friends, take a walk with my boyfriend, and sometimes even make it out to a concert. On bad days, getting out of bed feels like an accomplishment in itself.

Food and chronic illness

Food has become my biggest challenge. I’ve had to cut out so many things that trigger my Crohn’s symptoms, and managing multiple food allergies only complicates things further. To this day, menus often feel like a trap. Every item has a potential for disaster, and the anxiety of choosing the wrong dish often hangs over me like a storm cloud. Eating at restaurants went from being a simple pleasure (especially coming from a hospitality background) to a source of immense stress, as I tried to navigate what was safe and what wasn’t.

Social situations also bring out feelings of isolation. Watching my friends enjoy pizza, desserts, or a round of fun cocktails while I’m stuck carefully choosing my food, usually eating or drinking the same one or two things every single time – or sometimes just sitting out altogether – can be tough. There’s an invisible barrier between me and the rest of the group, and it’s hard not to feel left out.

looking fine and chronic illness
Looking fine and feeling like crap when sufferenig from chronic illness

Can you look fine & feel like crap?

What’s even harder to explain is the disconnect between how I look and how I feel. Friends often tell me, “You look fine!” and while that’s great on the outside, they don’t see the pain behind my eyes or the constant anxiety that lingers after every meal. It’s hard to articulate what it feels like to battle invisible symptoms that others can’t understand. But over time, I’ve learned that vulnerability is a strength. Sharing my struggles with others has helped me face my fears and find strength in what was once a deeply isolating experience.

Through it all, I’ve discovered unexpected sources of support. I’ve found online communities where I can swap recipes, share experiences, and connect with others who truly get it. These interactions have reminded me that I’m not alone, even on the days when it feels like the world doesn’t understand what I’m going through. I’ve learned to embrace my journey, celebrating the small victories and learning to find beauty even in the most challenging moments.

Don't let hurdles define you

Living with multiple autoimmune diseases for sure isn’t easy – it is a constant reminder that resilience isn’t about winning the battle every day or having all of the answers.  It’s about finding the strength to keep going.  Every day presents new hurdles, but I refuse to let them define me. Instead, I’ve learned to lean into my experiences. Through self-awareness, support, and as much determination as I can muster, I continue to strive for a fulfilling life. And if my story can inspire someone else facing similar battles, well, maybe that’s the real victory.

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