Explaining My Life With
Ehlers-Danlos Syndrome, Dysautonomia, and
Gastroparesis
People often stop me to express their concern and love for me. They know I'm sick, and they care. But understanding what I'm sick WITH can be a bit of a challenge. When you live with rare or underdiagnosed conditions, it can be hard for people to understand what you're going through. If someone is battling cancer, we all understand what that means. Conditions like Lupus, ALS, or MS are common enough that people at least have an idea what they mean. But a diagnosis of Ehlers-Danlos Syndrome, dysautonomia, or gastroparesis can be harder for people, no matter how well-meaning, to understand. So what do these conditions mean?
Ehlers-Danlos Syndrome is a genetic connective tissue disorder. I was born with it but wasn't diagnosed until I was 25 years old and a surgery revealed just how damaged my ligaments were. EDS is a collagen deficiency, so my ligaments, skin, blood vessels, and some organs are too loose and fragile. I partially-dislocate and hyperextended joints easily. I wear ankle-foot orthotics and occasionally need to wear braces to stabilize other joints too.
EDS often leads to dysfunction of the autonomic nervous system, the part of the nervous system that regulates functions you don't actively think about, like heart rate, blood pressure, temperature, and digestion. This dysfunction is known as dysautonomia, a term that encompasses many conditions. I was diagnosed with dysautonomia after fainting in the automotive section of a Wal-Mart. I struggle to regulate my heart rate and rhythm, blood pressure, temperature, circulation, and digestion.
Likely a consequence of that autonomic dysfunction, I've also developed gastroparesis, a paralysis of the stomach. My stomach does not digest or empty as it should, causing pain and digestive distress and severely limiting what I can eat.
This may be an oversimplification of the way these diagnoses are related, but it does help explain what's going on.
So what does all this feel like? Think of having the flu. Your body aches. Your joints and muscles are sore, and it hurts to move. It's like you've hyperextended every joint, pulled every muscle. That’s what the EDS feels like. You feel weak and tired. You nearly pass out every time you stand up, and your head hurts. Your heart races to keep up. You have to muster up the will to take on simple chores, or they may be insurmountable. You find that you have to take a break in the middle of even small tasks. That's what dysautonomia feels like. Your stomach aches, and you're afraid to eat because it could make you ill. Anything you eat or drink refluxes into the back of your throat. You feel nauseated like morning sickness, your lower gut feels unsteady, and you have no appetite. The pain feels like giving birth through your intestines while someone squeezes your stomach. That's what gastroparesis is like. Some days are better, even nearly normal. Some days are bad--all this and worse.
And what does this mean for me? I am sick. Barring dramatic medical advancements or a miracle, I will always have these conditions. I won't get better. I'll have good days, and I'll have bad days. But there's no remission. No cure. Very little even in the way of treatment. I could lie in bed. I'm sick, after all. But I don't want my life to BE these conditions. Yes, they are a part of my life, and they are like a lens that tints everything I do. But I love my life. It is full of happy, worthwhile things. I am wife to a great man who has dedicated his life to loving God and loving people. I am mom to two wonderful boys who face each day as if it's a grand adventure (and give the best snuggles ever). I am member of a church that has shown me such tremendous love and support. And I am a teacher to students who need my creativity and quirk to help them find their route to success.
I do not plan to stop working. If you've read my magazine article or the article about me in the newspaper, you might have guessed my career is a source of great joy to me. Being a teacher is to me like being a musician is to Billy Joel or happy trees were to Bob Ross. It's not just my job--it's part of who I am. I love it. But I don't want my job to leave me too depleted to be the kind of wife, mother, or friend I want to be. So I'm having to rethink what my daily life looks like in the small things. Chores, errands, volunteering, making the day-to-day work. I plan to write separate entries about how I do that, at home and in my teaching. For now, though, suffice it to say that I can't do it all. I have to say no to some valuable things, and I have to find new ways to do some essential things. I may need to accept help. That's hard, but I can't keep living as if I'm “normal.”
People sometimes comment about the grace, strength, and faith they see in me as I go through all of this. That's humbling to hear, but it's a blessing. I'll share more about that in a future post too.
For now, hopefully this entry gives you a better idea what life in my shoes (or rather, braces) is like. The simple fact that you're trying to understand shows me great love and helps me feel less alone. For more information about these conditions, I recommend:
I understand people may want to help. I'll share some ideas soon. In the meantime, if you want to show support, consider a direct donation to any of the above organizations, or purchase a Bravelet. When you purchase Bravelet jewelry, $10 goes to one of these organizations, and you get awareness jewelry that is actually fashionable. When people ask about your Bravelet, you can tell them about me and spread awareness while your money funds support and research.
Thank you for your love and support. Thank you for trying to understand this journey. You give me strength and encouragement. Thank you.
