how2notdieblog

Two and a half years since my last hospital stay (minus outpatient procedures).
One year since diagnosis.

So much to reflect on in the last year. Where do I start?

Fifteen months ago, I walked into a JW Marriott lobby, preparing to check in, carrying confusion, pain, and decades of unanswered questions. I walked out carrying words that changed my life.

I learned that the physical therapy of my childhood wasn’t random. The dehydration, GI bleeding, and fatigue weren’t isolated. The endless popping of my shoulder and finger joints wasn’t me being “anxious” or having a lack of discipline. The consistently inconsistent reactions to food that sometimes were safe, other times not so much, were my body whispering the truth: something deeper is wrong.

And then I heard a line that split my world open:

“If your issues aren’t connected, the issue is likely in your connective tissues.” – Dr. Anne Maitland

Hypermobility. The word hung in the air, foreign and familiar at the same time. Am I flexible? Yes. Always have been. I excelled in gymnastics, cheer, dance… you name it. I loved yoga, and I loved conditioning more than the actual sport. Party tricks? Sure. My body is full of them. But how is that related to my GI bleeding whenever I eat? What had been an occasional bout of stomach bleeding that would occur from time to time became incessant for several months straight. I had no answers. But a primary doctor recommended this medical conference for me and told me to go with all of my lab work and just ask around.

In the middle of one of the sessions, one of the doctors at the conference, Dr. Anne Maitland, made a comment referencing some questions I asked about gastrointestinal issues and asked me what I was doing to address my GI + hypermobility symptoms. Looking dumbfounded, I told her, I’m flexible, but what does that have to do with my food allergies, intolerances, and severe constipation? How is that related?

She told me to mention Ehlers-Danlos Syndrome and hypermobility to my practitioner back home, and to stick around after the session if I had questions.

And boy, did I have questions.
I asked some preliminary questions to Dr. Maitland, right after, and while looking over my notes later that day, I met the woman who would soon change my life, though I didn’t know it yet.

This stranger (a medical doctor who specializes in pediatrics) at my table became what I would describe as my lifeline. We spoke for over four hours: laughter, tears, stories tumbling out like puzzle pieces finding their place, and one-liners from her brother-in-law sitting nearby.

What an experience. 

Her twin sister shared from her own journey what had helped her neurologically and physically. She gave me tips on exercises that improved her symptoms. Taught me about body-mind connnection. 

And for the first time, I felt seen.

I don’t know how to truly share just how monumental this was in my life.

Like a nerd without any ability to pick up on social cues, I fumbled through my medical binder with notes, lab work, a list of idiopathic diagnoses, unexplained symptoms, chart notes from hospital stays, and images from endoscopies and colonoscopies. As I frantically tried to find a clear piece of paper to write every single word down… she reminded me she wasn’t in a rush and had the time to repeat whatever I needed repeated.

She gave me language. Vocabulary. Words that carved a path connecting all of the years of silence and dismissal.
I shared that I’d been tested for celiac 17 times, and that a gluten-free diet only worked sometimes. I told her about every stomach biopsy, breath test, blood test, and stool sample.

She listened to every bit of it. But more than just listening, she shared that some of my experiences sounded similar to hers growing up and in college.

I don’t know how to thank her. I don’t know how to credit her. I don’t even know how to explain or put into words just how much those 4+ hours meant to me.

Because of her, I found treatments that steadied me- treatments that stabilized the most uncontrollable symptoms.

Because of her, I found a doctor who understood. Because of her, I was able to tell my former PCM, who blamed all of my symptoms on my weight and anxiety, that no, there are actual tests to run and labs to send for that will prove this isn’t due to my weight and isn’t just in my head.

Because of her, I finally had a diagnosis.

There is no cure.
I am rare. Genetically, I have a lot mutations and variants that aren’t typical. But I can live a full life. 

I have a name. My symptoms have a name.

And a name is power.

It means proof. It means I’m not lazy, not dramatic, not “always sick with something.”

It means I am real. It means there are others like me out there.

As a child and in college, my survival looked like really overdoing it on caffeine to stay upright, to stay focused; movie theater popcorn to not feel faint; drinking only liquids some days and avoiding solid food until I had to eat in front of family for meals to quiet the GI bleeding; and trying every “diet” to see if one would help ease my stomach pain (paleo, vegan, vegitarrean, GF, carnivore, you name it!. People laughed, rolled their eyes, and dismissed me.

But my body knew. I didn’t have the words to use, or how to describe what I was going through.

But one evening, in Indianapolis, Dr. Sarah Cohen Solomon gave me hope. She game me her time, the vocabulary, a list of tests to request, treatments to suggest, along with questions to ask my primary… just to get me started on the right path.

I don’t know how to thank her. Or how to pass it on. But I know this:

I will spend the rest of my life trying.

If you’ve ever had a moment where a medical professional truly saw you, share it. Someone out there needs to hear it. There ARE providers that care. Don’t give up hope. 

XX, Lauren

Special thank you to The Mast Cell Disease Society for hosting the TMS Mast Cell Con 2024 in Indianapolis; to the Ehlers Danlos Society for hosting the 2025 Global Learning Conference in Australia (and virtually), as well as the 2025 International Scientific Symposium in Toronto, Ontario. These conferences have introduced me to some of the world’s best phsycians specializing in my conditions and I’m eternally indebted. Additional gratitude to Dr. Anne Maitland for her work contributing to the research for patients like me, and contributing to Disjointed – this text has been so helpful in providing me a deeper understanding of my body and why it does the things it does.