I have been diagnosed with Crohn's Disease, Ehlers Danlos Syndrome, MALS, Degenerative Disc Disease, Fibromyalgia, Spinal Syrinx, and Osteoarthritis.
I was initially diagnosed with Crohn's in 2014, but had been experiencing symptoms for years that had gone undiagnosed, misdiagnosed or routinely passed off as exaggerated or something else entirely. Since then it's been a revolving door of medication experimentation, hospitalizations, surgeries and most importantly, learning to fight for myself. The start of my diagnosis was the hardest fight of my life. I failed medication after medication. And required hospitalizations and surgeries that were related to medication failures and Crohn's complications. I was at my weakest and had to find myself having to fight harder than ever to be heard. I learned quickly I was not a textbook case. I became a complex patient, difficult to get things under control. My marriage failed because "having a chronically ill wife [was] not what he envisioned" for his life. (A blessing in disguise!) I'm still undergoing diagnostics, learning new pieces to the medical puzzle that is, well, me. I have had a fantastic support system from the beginning of close friends and family who hold me close and have my best interests at heart. This is what gets me through the hard days.
Luckily, I have led a fairly full and fantastic life looking back. However, there is still so much I want to do - which comes with its own set of frustrations. I know what I'm missing out on, and to go from traveling and leading and exploring to a screeching halt was quite an obstacle. I'm always learning. Learning of new ways I can help myself manage stress, learning limitations and when to take it slow. I am learning so much about myself as a person. No one can truly understand the soul searching a person goes through until chronic illness comes and you are forced to look at yourself from an entirely new perspective, often one you are not necessarily prepared to see.
I find that so many people are still unfamiliar with the basics of IBD and Crohn's Disease. It's a disease that affects the entire digestive system, "gums to bum". It involves the joints, the eyes, the immune system, energy levels, nutrition, what you eat, how you eat, as well as digestion. It can involve surgery, ports, tubes, interventional medications and whole host of things just to manage the disease, and keep the patient comfortable in the quest of achieving remission. It is important to keep these things in mind if someone you care about has Crohn's Disease. Understanding and support is everything.