My Condition Doesn't Define Me

On March 20, 2020, my life changed.

That’s the day I was diagnosed with Ehlers-Danlos syndrome. In short, EDS is a group of inherited genetic connective tissue diseases that affect the production and formation of collagen—the glue that is responsible for holding our joints, skin, blood vessels, and organs together and in place. In day-to-day life, that means constant dislocations or partial dislocations of my joints, chronic pain, and instability of my joints, making it difficult to walk, lift, or exercise. Because EDS is incurable, I have to work on managing day-to-day symptoms in hopes of preventing flare-ups of EDS or its secondary conditions.

This condition is hard to live with. But my diagnosis was not the end of my story. It was the beginning of a new chapter—one where I could focus on treatment for what I had, knowing there were techniques to manage my symptoms and ways to adapt my lifestyle to fit my new needs while still pursuing my dreams.

Facing the complexity of my condition

While in the diagnostic process, I was told time and again that a diagnosis wasn’t worth it because there is no cure. There are so many conditions in our world that don’t have a cure—type 1 diabetes, cerebral palsy, and cystic fibrosis, to name a few. But diagnosis is vital for treatment. Not only that, but it allows those of us who live with an incurable condition to better understand the way our bodies work. And that understanding allows us to live as well as we can.

As I sat in the doctor’s office on diagnosis day, at 20 years old, I was given the run-down of EDS, including what sounded like a WebMD version of how it would affect the rest of my life. As my doctor rattled off the list of ways it would affect me, I couldn’t help but feel overwhelmed and hopeless. The painful “pops” I had been experiencing for years were actually my joints dislocating out of their sockets from the lack of collagen. The translucent skin, visible stretch marks, abnormal scarring—all signs of EDS I had displayed since childhood. I would likely suffer from prolapse of multiple organs in my later life. The potential of having an aneurysm, stroke, or blood clot were all elevated for me. The complications of my collagen being structurally abnormal would lead to multi-organ dysfunction, which had the potential to leave me reliant on medical devices to perform daily functions.

EDS is complex, not only in the nature of the disease but also in the way it impacts my life in an emotional, mental, and physical way. EDS has robbed me of quite a few things an able-bodied person would find mundane. It has taken my bladder and bowel function to the point where I am now reliant on a permanent urinary catheter and a diverting ileostomy to allow my body to perform the most basic functions. One of the primary systems EDS affects is the vasculature, so I now have what is called a Port-a-Cath—a device implanted under the skin that acts like a long-term IV when accessed to deliver treatments intravenously to a patient. Because of EDS, I also have multiple secondary conditions which have led to frequent fainting, irregular heartbeat, pelvic floor dysfunction, prolapse, severe allergic reactions, malabsorption, vitamin and mineral deficiencies, exercise intolerance, and debilitating fatigue that limits my outings with friends. I’m an ambulatory wheelchair user, and I need bilateral ankle-foot orthoses (supports on my lower legs) just to walk without dislocations. I utilize a variety of assistive devices to truly be able to thrive in a world made for those who are able-bodied.

To say it has been an easy road would be a lie. I am someone who tries to look on the bright side—I do what I can to not let the negative aspects of my condition impact my life, but even so, it does. But the hardships are not the point. Diagnosis doesn’t equal death.

One thing I know from going through this journey and enduring the hardships while also cherishing every good day is this: It is 100 percent okay to have hours, days, or even weeks when I feel negative as I think about the body I used to have and the future I once thought would be mine. What makes these feelings more bearable is knowing that although my abilities may change and I may need more support, living a full life is still possible—even if it’s not the life I envisioned.

Learning what I can and can’t control

Although having a chronic, life-altering illness most definitely has its downs, it has the potential to have just as many ups. For me, one of those ups is learning what I can and can’t control. I can’t control what happens to me, what God has planned, or what trials I may face. But I can control how I react to my situation and all the curveballs that are thrown my way. I can find the ability within my disability, like the time I was able to use my experience of being a patient as a guide in studying pathophysiology. I can search for the purpose in my pain. For me, part of that purpose is using my story to help others.

I have the choice to let my diagnosis take control over me or to take my life back. After all, my diagnosis is only a small piece of the puzzle of who I am. Achieving my goals and chasing my dreams requires adaptations, but I am chasing them, nonetheless. I am a biology major and a psychology minor, and I hope to attend medical school after earning my undergraduate degree. I am a woman who has hobbies: photography, baking, writing, hiking. I am a daughter of God, and I believe his plan for me isn’t one that involves pain for nothing. I am a “dog mom” to the best boy, Mack. I am all of these things—and I am someone who is diagnosed with Ehlers Danlos Syndrome. I am someone who spends a great deal of time in and out of the hospital. I am someone who needs aids, medications, and medical devices to live the most “regular” life I can. I am someone who spends most of my time in doctors offices, advocating for myself.

I am someone who has a life-altering illness but who doesn’t let the illness have me.

Seeing my strength

There have been so many times when I have felt like I couldn’t go on. I have felt betrayed by my own body.

But EDS has also shown me my true strength. It has shown me how physically strong I can be, and how resilient the human body can be despite going through so much trauma. It has opened my mind to mental and emotional strength I wouldn’t have found if not for my difficulties in life. It has shown me my spiritual strength and deepened my faith—I have learned to trust my higher power when it feels like nothing in my life is going right. And I have overcome things I never knew I could.

My diagnosis has helped me learn how to be unapologetically myself, how to advocate for my needs without shame, and how to live my life like every day is my last.

My life is not some sad story of a woman whose dreams were crushed. It’s a story of hope, of strength, of perseverance, and of living despite the hardships that are thrown my way. My diagnosis has opened so many doors—I have had the opportunity to use my knowledge, experience, and love for writing to tell my story in a way that can inspire those around me.

When things are looking gray, I often use a phrase similar to this quote by Alice Morse Earle: “Every day may not be good, but there’s something good in every day.” Difficulty doesn’t always mean despair.