Molly

Chronic recurring kidney stones, Urinary Retention, Pelvic Floor Dysfunction

I was sixteen when my life started revolving around hospitals instead of classrooms. What I thought was the worst pain of my life, turned into years of chronic kidney stones, urinary retention, cycles of catheters, pelvic floor dysfunction, daily antibiotics, and recovery. I learned medical terms most people never have to know, not because I wanted to, but because I had to. I thought the physical pain was the hardest hurdle, but losing grip of everything I once knew hurt worse. In fact, I wanted to be a nurse but the thought of dealing with medical tasks outside of my patient life felt daunting. I wanted to run from and escape it, not be more surrounded. 

There were months when the emergency room felt more familiar than my own bed. The pain would come in waves so sharp it stole my breath, leaving me doubled over with nausea and exhaustion. Some days, I couldn’t sit through class without feeling the heavy ache in my back, where the school nurse and my guidance counselor became my lifelines. IV poles replaced backpacks, and my teammates moved on without me while I watched from hospital windows. I missed school dances, soccer games, and weekends with friends because my body had other plans. It’s hard to explain what it’s like when something as basic as using the bathroom becomes a daily challenge. When your body doesn’t cooperate, and every day feels like a test of patience and endurance. It may not even seem like a big deal to not be able to urinate normally, but it’s taken everything from me as I am unable to work and had to drop out of grad-school. I pass about 1-2 kidney stones a month, and have had multiple procedures and surgeries. It seems as though one problem leads to another. I also have IBS, possible Chrons and possible endometriosis (looking for a doctor that’ll listen and diagnose). As of late, I also have been getting a bunch of tests done for pancreatic cancer. Don’t have any results, but staying hopeful.

It’s hard to think about how long it’s been–6 years now! It makes me sad to think of how bad it’s gotten, but even in those moments, I found small victories. Getting through a day without pain meds. Laughing with a nurse who remembered my name. Passing a class I had to complete from a hospital bed. I learned to advocate for myself, to speak up when something felt wrong, to push for answers. Living with chronic illness has taken a lot from me, but it’s also given me perspective. I’ve learned that strength isn’t always loud; Sometimes it’s quiet, steady, and stubborn. It’s showing up to the next appointment, the next class, the next day, even when you were up all night feeling so sick and you’re tired of fighting. My journey hasn’t been easy, but it’s made me resilient in ways I never expected. I may carry this condition with me for the rest of my life, but I refuse to let it define who I am. Because even when my body feels fragile, my spirit isn’t, and that to me is its own kind of healing.

Tabby’s Story

Fibromyalgia

Fibromyalgia (Just the tip of the iceberg)

A word I had never even heard before suddenly became the label that defined me, or so I thought.

The day I was diagnosed, I thought it meant answers, maybe even hope. But instead, it marked the beginning of a battle I never asked for. A life where I woke up every morning in a body that felt eighty years old, trapped in pain that never took a break. My joints throbbed and burned as if they were filled with fire, my bones felt fragile and stiff, and even the smallest movements came at a cost.

Soon, I couldn’t go to school anymore. Online classes were my last grasp at normalcy, they started slipping through my fingers. My brain felt like it was underwater, words blurring and thoughts dissolving before I could catch them. The fatigue was bone-deep, the kind that no amount of sleep could touch.

I forgot what peace felt like.

What a day without pain felt like.

There were nights when the muscle spasms hit so violently that I screamed for someone, anyone, to help me but no one really could. Gabapentin. Muscle relaxers. Anti-inflammatories. Pills with promises that faded as fast as they came. Nothing dulled the pain for long.

Meanwhile, life moved on without me. My friends packed their bags for college, and started their adult lives while I stayed behind, in a room that felt smaller every day. The world I once belonged to now existed through screens and secondhand stories.

I spent a long time searching for reasons to keep going and some days, I still do. Chronic illness steals so much: your youth, your plans, your identity. It leaves you grieving the person you used to be while trying to make peace with the one you’ve become.

But here’s what I’ve learned, even when your world feels unbearably small, even when pain is all you’ve ever known, there is still strength in surviving. Every day I get through is one more day my illness doesn’t win. And though I may not remember what it’s like to live without pain, I’m learning what it means to live with it and that, somehow, is its own kind of victory.

Crystal’s Story

Hashimoto’s, Fibromyalgia, & Dysautonomia

You have Hashimoto’s, and it’s an incredibly difficult condition to treat,” my primary care doctor told me during a telemedicine appointment on my lunch break.
I had just taken a bite of my veggie sandwich in my freezing corporate office when she continued, “We have a long road ahead of us. Autoimmune diseases are tricky.”
Boy, was she right.  And I wasn't prepared. Thyroid conditions run in my family, and I had been chasing a diagnosis for nearly a decade. Unfortunately, that wasn’t the end of the road. From there, I was referred to an endocrinologist, who then referred me to a rheumatologist, a neurologist, and even a cardiologist. This was all to rule out what might have developed from going so long without treatment.
Those appointments led to two more diagnoses: fibromyalgia and a form of dysautonomia. You see, these conditions often come in multiples — once you have one, others tend to follow. I don't just have one complex condition to manage; I have several. And as anyone with a chronic illness knows, the journey rarely ends there.
To top it all off, I lost my job. Between ER visits and missed workdays, I was let go from my corporate position. I remember thinking, Who would want to hire a chronically ill girl who keeps calling out?
But somewhere between the unknown and the exhaustion, a new thought began to form: If I can’t work for somebody else, why not work for myself?
I had been contemplating starting my own design business for a while — I didn’t think it would happen as soon as it did. I’m an architectural designer. The work is demanding and often stressful, but it’s also what I love. So I took the leap.
Now, in my first year as a business owner, I’ve worked on more projects than I ever did at any single company. I’m building my business between flare-ups. It’s not easy — but it’s worth it.
This story isn’t just about me, though. It’s about creating a space where people like me (people with chronic illnesses) can thrive. Through High Bar Designs, I’ve been able to hire others who also live with chronic conditions, including a drafting assistant and an administrative assistant who both understand what it means to work through flare-ups, fatigue, and unpredictability.
We are misunderstood... but certainly not unmotivated.
Together, we’ve built something that’s rooted in understanding, empathy, and excellence by giving each other grace, flexibility, and purpose.
At High Bar Designs, our motto is simple: If you take care of people, they’ll take care of you.
We’re setting the standard — and changing our little corner of the world, one project, one person, and one act of understanding at a time. 

Olivia’s Story

Endometriosis & interstitial cystitis

If I had to describe living with chronic illness in one word, it would be exhausting. Not just physically, but mentally and emotionally too. For as long as I can remember, my body has always hurt in some way. As a kid, I thought that was normal, that everyone’s body ached, that fatigue was just part of growing up. Two years ago, I was finally diagnosed with fibromyalgia, and for a while, it felt like I finally had an answer. But it didn’t stop there. In December 2024, I started having constant pelvic pain that never went away. It got worse and worse until it became unbearable. After months of tests, appointments, and trying to convince doctors that something was seriously wrong, I was diagnosed in July 2025 with endometriosis and interstitial cystitis. Since then, every day has been a challenge. I’m still dealing with chronic pelvic pain every single day, and it’s exhausting in a way that’s hard to put into words. I’ve had so many labs, scans, and procedures that I’ve lost count. I recently had a colonoscopy that showed erosions in my small intestine, and I’m waiting to have an endoscopy to hopefully get more answers. On top of all that, I’m in college and working full-time, which is a lot to handle when your body is constantly fighting against you. Some days I can barely make it through a shift or finish schoolwork because the pain and fatigue are too much. Lately, I’ve even started considering applying for disability because working has become so hard for me. It’s something I never imagined I’d have to think about at my age, but chronic illness forces you to rethink what normal looks like. It feels like my life is a constant cycle of appointments, waiting rooms, and test results that never seem to end. There are days when I feel hopeful and strong, and days when I just feel completely drained. I’m learning how to live in the in-between, between pain and relief, between hope and disappointment, between wanting answers and being afraid of what they might be. 

Kayla’s Story

MS

Honestly, I had no idea what an autoimmune disease even was until my own diagnosis and journey began. It started around June 2019, when I was 13 years old. My vision had become blurry, and my mom told me it was probably just from watching too much TV. One day, while we were on our way to the grocery store with the windows down, I remember feeling fine — until suddenly, everything went black for a split second. We thought I had just fainted from the heat and didn’t think much of it.

About a month later, as we were getting ready for bed, my mom noticed that my face looked lopsided. We went to the ER, and the doctors said it was Bell’s Palsy. I was prescribed medication and given an eye patch because I couldn’t close one eye. While the medication seemed to help at first, I started becoming very clumsy and losing my balance often.

We went back to the ER, where they told me it was vertigo and prescribed medication for that, but it didn’t help. Soon after, I had an appointment with my primary doctor because I kept falling. That morning, I lost some function in my legs and couldn’t get dressed by myself. My mom had to help me to the car, and by the time we arrived, I couldn’t even stand. I was sent to the Children’s Hospital of Augusta.

I don’t remember much after that until I was officially admitted. They ran neuro exams, CT scans, bloodwork, and MRIs. The scans showed lesions on my brain, so they did a spinal tap and diagnosed me with ADEM (Acute Disseminated Encephalomyelitis), another autoimmune disease. I was started on steroids and sent home with a taper. It worked for a little while—until it didn’t.

My symptoms came back, but worse. I was back in the hospital for two weeks, going through multiple tests, all negative except for what they already knew. They decided to do another spinal tap, which finally came back positive for MS. By then, I had missed most of 8th grade and was doing homebound schooling along with physical therapy three times a week. During that time, I had to relearn how to walk, talk, and even write again.

I was referred to a specialist and started taking Gilenya daily. It’s been almost six years since everything began, and thankfully, I’ve had minimal symptoms and flares. I’m forever grateful for that. My main symptoms now are fatigue, restless legs, soreness, and migraines.

I hope my story inspires others to share their own journeys and know that they are not alone in this battle.

Jules’s Story

Lupus

Almost 2 years ago, I was really sick, and the doctors kept telling me I just had a virus and it would go away on its own. i was told that for about 2 weeks. I got the COVID-19 vaccine a few weeks before this, so they assumed it was just a common reaction to a vaccine. Eventually things got so bad that my mom took me to the hospital where i got diagnosed with AKF( acute kidney failure). I was in the hospital for 2 months on treatment and different meds. I also was diagnosed with lupus. I still go to the hospital often for treatments, fluids, and tests. It’s hard, and I understand how u feel bc having a chronic illnem so sorry ’m so sorry u have to go through this too. ❤️

Molly’s Story

Anklyosing Spondylitis

For as long as I can remember, I thought exhaustion and pain were just things everyone dealt with. I was always active and motivated, the kind of person who powered through, until my body started sending me signals I couldn’t ignore. What began as stiffness in my back and random flare-ups of pain soon turned into days where even getting out of bed felt like a marathon.

Initially, I was told it was just stress, growing pains, or inflammation from overexertion. I bounced between doctors and specialists, explaining symptoms that didn’t seem to add up neatly on a chart. It was frustrating, not just the pain itself, but the feeling that I was constantly explaining myself and still being misunderstood.

After months (and countless appointments), I finally met a rheumatologist who listened — really listened. Blood tests, imaging, and a long conversation later, I got my diagnosis: ankylosing spondylitis, an autoimmune disease that causes inflammation in the spine and joints.

It was a strange mix of emotions, relief to finally have answers, but also fear of what that meant for my future. I remember sitting in my car afterward, letting the words sink in, realizing that my life would look different than I had planned — but that different didn’t have to mean less.

Since then, I’ve learned how to listen to my body, advocate for myself, and find community in others who understand the unspoken challenges of autoimmune life. My diagnosis isn’t my identity, it’s just part of my story. And that story has taught me strength, empathy, and the beauty of slowing down to care for yourself in ways you never thought you’d need to.

That’s why I started this space — to share real experiences, raise awareness, and remind others that even on hard days, we are never alone in this.

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