Share Your Story

My brother has autism and also struggles with chronic anxiety. Growing up, I didn’t always understand him—but I always loved him. Now that I’m older, I see how hard he works to navigate a world not built for his brain. He’s smart, thoughtful, and funny in his own quiet way. Supporting him has taught me patience and deep empathy. I’m better for knowing him. I joined a group for Autism family members and that has been very helpful to be surrounded by such a supportive, fun, and understanding community.

Watching my friend face daily pain with such grace has changed how I see strength. I’ve learned to show up, to listen, and to bring snacks. She has taught me a lot as I've watched her going through CRPS. 

Most people don’t understand what “chronic fatigue” really means. It’s not being tired. It’s being so drained that even speaking can feel impossible. I used to work full-time, travel, and host parties. Now, I measure energy in teaspoons. I’ve had to grieve a lot, but I’ve also found peace in the slow pace. My life is quieter, but it’s not empty. I still spend time with my grandkids, it's just in shorter doses. I still go for walks, it's just only on days I have enough energy and the walks are much shorter than they used to be. I encourage others to be kind to themselves and I try to remember that each day, too.

Sjögren’s is often overlooked, but it affects everything—eyes, mouth, joints. Getting diagnosed gave me clarity and direction. Now I focus on managing symptoms and celebrating progress.
My advice to others who htink they might be going through Sjögren's is to trust your instincts, keep asking questions, and find a doctor that is knowledgeable about this. It has been a game-changer for me to have an amazing doctor help me learn how to navigate this. 

Fibromyalgia turned my life upside down. There were days when even brushing my hair felt like a battle. I grieved the loss of the “old me” for a long time. But eventually, I found a doctor who really listened, and that changed everything. With a mix of medication, gentle movement, and lifestyle shifts, I started to feel human again. I also discovered a passion for writing and began journaling daily—it’s become a form of healing I never expected. I still have pain, but now I also have purpose.

My husband was diagnosed with MS two years into our marriage. We were newlyweds, full of dreams and plans—and suddenly, everything shifted. But in that shift, we found strength. It hasn’t always been easy—there have been tears, hard conversations, and long nights—but we’ve built a new kind of life. He still has goals, I still have dreams, and together we’re figuring out how to chase them, one modified step at a time.
To other caregivers: You're doing better than you think. Small support means everything.

RA means some days are okay and some days really aren’t. It’s taught me to cherish the good ones and be kind to myself on the bad. I’m learning not to push through, but to pause. My body isn’t the enemy—it’s just asking for care.
I'm also learning I don’t have to be “productive” to bring value. Being kind to people around me, even when I need to rest in a chair, that can bring value, too.

My 9-year-old was diagnosed with Type 1 Diabetes last year. It was overwhelming at first—so many numbers, so many alarms. But we’re figuring it out. Carb counting is second nature now, and he’s back to playing soccer. It’s a new normal, and we’re learning to thrive in it. For other parents out there with children going through Type 1 diabetes, I want to let you know that it's normal for things to feel overwhelming at first,  but it does get better as things get into more of a routine. You're doing a good job caring for your child and getting them the help they need. Keep going!

My best friend has chronic Lyme. I didn’t get it at first—I thought antibiotics would fix everything. But it’s so much more complicated. I’ve learned how to really show up for someone: not with fixes, but with presence. We’ve cried together, and laughed too. I’ve learned more from her resilience than from any book or class.
If you’re standing beside someone, stay. Your quiet support means the world. I also found that flexibility is key - sometimes plans have to be canceled at the last minute because she won't be feeling well. I know to not take it personally and just be thankful when things do go as planned. 

Crohn’s has given me a weird superpower: I know where every public bathroom is within a 10-mile radius. Humor helps. So does a good GI doctor and knowing I’m not the only one navigating this. You’ve got to laugh when you can—because sometimes, laughter is the best medicine (unless you're also on biologics... then maybe it’s tied for first).

My wife lives with Chronic Fatigue Syndrome, and it’s taught me to see strength differently. Her strength is displayed in her patience, her quiet courage, and her determined will to keep showing up in ways that she can. I’ve learned how to slow down with her, how to advocate in doctor’s offices, and how to let go of expectations we used to hold. There’s grief, yes—but also love in layers I never knew existed.

After years of being told “it’s just bad cramps,” I finally got a diagnosis: endometriosis. It felt like validation and devastation at the same time. Why did it take this long? Why did no one listen? Since then, I’ve become my own advocate. I’ve joined support groups, spoken at panels, and helped other women find the words to find answers. Living with chronic pain has been hard, but speaking up has given me back a sense of purpose.
To others: Your pain is real. Keep speaking up. You deserve to be heard and helped.

Watching my dad go through Parkinson’s has been humbling. He’s lost some independence, but not his sense of humor. We still dance in the kitchen on good days. He teaches me that dignity doesn’t depend on having a body that functions "normally". I'm thankful for this opportunity to care for him. I am sometimes very tired at the end of the day, but it's worth it to enjoy more special memories with my dad. 

Psoriasis can be incredibly isolating. People stare or ask questions that sting. I used to cover up, even in the summer, just to avoid the looks. But after connecting with others online who also deal with it, I’ve started letting go of shame. I’ve learned about treatments that help, and I finally found a dermatologist who gets it. I wore a short sleeve shirt to the park last week for the first time in years. That felt like a win.
I'm also finding that healing isn’t just physical—it’s emotional too. I'm beginning to feel good in my own skin. I hope that everyone going through Psoriasis who reads this will be encouraged.

Migraines have shaped my life in ways people don’t see. It’s not just the pain—it’s the unpredictability, the canceled plans, the fear of letting people down. I’ve missed weddings, family dinners, even my own birthday parties. But I’ve also found clarity. I’ve learned who my true friends are. I’ve found techniques that help—like hydration, sleep, and reducing screen time—and I’ve stopped apologizing for taking care of myself. That’s been the hardest and most important lesson.
To others going through Migraines, you are not a burden. You matter.

My teenage daughter has Postural Orthostatic Tachycardia Syndrome, and it has turned our world upside down. We went from sports practice to hospital visits almost overnight. But she’s strong. We take it one day at a time.
To other parents: Your advocacy matters more than you know. Keep showing up. Also, look for a parent support group - sometimes hospitals can refer you to a good support group. It's been helpful to empathize with other parents and get helpful tips on how to navigate POTS.

My wife has long COVID, and some days it feels like we’re living in slow motion. Things that used to be easy—grocery shopping, going for walks—are now huge undertakings. It’s lonely, and a lot of people don’t understand. But we’ve created a little world where we care for each other. I’ve learned to be still, to listen more, and to help out where needed in the moment. It’s not the life we planned, but it’s one we’re learning to live with grace.
My advice for other people navigating a chronic condition that their loved one has is that you can learn to adapt. Find a new normal and find ways to still stay connected. Maybe you can't go on hikes like you used to together, but maybe you can walk around the block, or sit and enjoy a beautiful view. Even the little things matter.

I was diagnosed with Lupus eight years ago, and at first, it felt like my whole life changed overnight. The fatigue was crushing, and the pain unpredictable. But over time, I’ve learned to listen to my body more carefully. I’ve built routines that support my energy and surrounded myself with people who understand—or at least try to. Sharing my story has helped me feel less alone, and it’s been incredible to hear others say, “I have Lupus too - I understand.” That connection means everything. I’m not who I was before lupus, but I’m learning to love who I am now.

Chronic back pain is a part of my daily life. I’ve had to make lifestyle changes—supportive shoes, better chairs, physical therapy. I’ve become an expert in ergonomics! It's not perfect, but I manage.

With EDS, my joints are way too bendy and sometimes just... don’t cooperate. It’s frustrating, but I try to laugh when I can. My cane is hot pink and sparkly—it’s part medical device, part accessory. If you’ve got to lean on something, it might as well match your outfit! I encourage other people with syndromes that are either very obvious or require mobility assistance devices to have fun with decorating a wheelchair or walker, for example. It brings a smile to those around you and can be a good conversation starter.