Hi, there! I’m Haley James, and I’m the creator of The Chronic Collective. While I can’t imagine life without The Chronic Collective now, it was not always part of the plan. Like most people, I planned out my career path and life and was more than ready to go after it! As most of you probably know all too well though, things sometimes (almost always) don’t go exactly according to plan and there tends to be circumstances and situations that happen that you hadn’t anticipated. Getting sick for the last 8 years was that for me. 

About 8 years ago, I was finishing my last year of design school, and I began getting sick whenever I ate food. In the beginning, it was fairly mild. As time went on, though, my symptoms became more and more prominent until finally, I could no longer excuse them away. After seeing a gastroenterologist and undergoing invasive testing, I was told there was nothing wrong. It was “just in my head.” As much as I wanted to believe that, I knew it definitely wasn’t. What I didn’t know was that this was just the beginning of a long chronic illness journey. 

For the five years that followed, I was told everything from, “It’s anxiety”, “for attention”, “eating disorder” to “psycho-symptomatic” and “it’s all in your head” – the list goes on and on (I’m sure if you are reading this, you probably know what I’m talking about). I was a full-time undiagnosed patient, where investigating my health became my unpaid, unwanted, unplanned for, full-time job.

I spent almost all of my time researching (and on insurance calls, of course) trying to understand and figure out what was going on when it was clear the doctors weren’t going to be able to. Finally, going into my fifth year of being undiagnosed and being gaslit way too many times, I gave it one last shot. I researched a bunch and asked for what I declared would be my final test. I said to myself, and to my parents, if this isn’t it, then I’m done.

This one test ended up not only being positive for 1 rare disease but 3.

After that, multiple feeding tubes, and a 3-week Mayo Clinic trip, the diagnoses came piling on.

Some of my diagnoses include: Autoimmune Autonomic Ganglionopathy, Gastroparesis, Chronic Intestinal Pseudo Obstruction, Postural Orthostatic Tachycardia Syndrome, Esophageal Dysmotility, Intestinal Dysmotility, Autonomic Small Fiber Neuropathy, Heavy Metal Poisoning, Superior Mesenteric Artery Syndrome, Hashimoto’s, Raynaud’s, Mast Cell Activation Syndrome, Bilateral Neurogenic Thoracic Outlet Syndrome, Hypothyroidism, Severe Hypoglycemia, Medical PTSD, and Celiac Disease.

Diagnoses and answers have finally lead to management and care options like my feeding tube, saline infusions, experimental medications, and weekly IVIG plasma infusions all of which I have been on for the last 3 years and have been able to get to a much more stable place than I was – and for that I am incredibly grateful.