May is Ehlers Danlos Syndrome Awareness month. This will be my master post about living with EDS.
I have Ehlers Danlos Syndrome (originally diagnosed as “loose ligament syndrome” over 30 years ago). EDS is a disorder that affects the collagen in someone’s body. Since collagen makes up connective tissue, joint hypermobility and stretchy skin is the flagship symptom of EDS. Collagen is present throughout the body and so EDS can affect a number of things, from wound healing to digestion to the cardiovascular system and even mental health and neurology.
I experienced my first joint dislocation before I started kindergarten. My elbow dislocated as one of my parents was getting me out of a chair. I still remember the many visits with social services while I was in the hospital, confused and in pain.
My childhood was spent in and out of the hospital with joint dislocations and other issues. I dislocated one of my knees at least once a year, often more. My ankles “fell” and I had to wear orthotics. I was a regular at the Shriners Hospital for Children and am grateful for them because otherwise I would not have received the care that I did. I also had severe asthma and allergies, depression and anxiety, debilitating migraines, and heart arrhythmia and tachycardia. I was a “sick kid” and never able to play and rough house with the other children. I felt fragile. I lost myself in books and in the natural world at my feet, the moon above my head, and the rain that would fall outside my window.
I have dislocated each of my joints except my hips more than once. I have had one surgery to reset and repair joint damage. I experience subluxations (partial dislocation) at least once a week. These repeat injuries have led to chronic joint pain, and my muscles trying to work overtime to hold everything in place results in chronic muscular pain and fatigue. I have continued to live with depression and anxiety. My wound healing is slow and irregular. I manage digestive issues with a restricted diet. I have frequent bouts of dizziness and tachycardia and occasional migraines and vision issues.
These symptoms have impacted my daily life whether I was willing to acknowledge it or not, and believe me there have been many years in which I did not want to acknowledge it. I didn’t even want to talk about it. I didn’t want to be the “sick kid” any more, I wanted to be an adult who was able to make my own choices and not let my body get in the way of what I wanted to do.
EDS impacts my ability to “earn a living.” I was fired from a job in a doctor’s office after an injury and lack of access to medical care put me in a wheelchair for a year (the first of many). I have had to quit jobs where I was expected to either be on my feet or sit at a desk all day; I can’t stay in one position for long without a joint slipping or my muscles locking up. When my body is not able to regulate its own autonomic system, I have to lie flat for hours or risk blood pressure drops, heart irregularities, dizziness, and nausea. On my worst fatigue days, my body feels like it is moving through a deep pool of water; my thoughts are sluggish and it is hard for this writer to use words at all. None of this is particularly conducive to working a wage labor job, which is one of the reasons disabled people are so undervalued, underrepresented, and unsupported in our culture. When you can not reliably contribute to economic growth and capital, your value as a human being declines.
I have slowly found ways to ensure I have a reasonable quality of life. I am trying to build a life that is less dependent upon wage labor. I stay as active as I can. I practice meditation, pranayama, and yoga to help regulate my moods, autonomic system, and engage in gentle stretch and strength building. I have a dedicated spiritual practice and draw comfort and inspiration from nature. I prioritize things that I enjoy or that feel meaningful with the energy I have available. I have had to develop a lot of clarity around what is important, who I want to be, and what I want to do in the world. I cope with the pain that I experience every day in a myriad of ways. I try to find a balance between “I am going to hurt anyway, so I might as well be doing something” and pushing myself too hard by pretending I don’t have limitations.
I started Disabled Hikers to help others find that balance too. I’ve always loved nature and being outdoors, but I haven’t always felt confident enough to go hiking, especially by myself. I have to be very careful, that’s for sure; one wrong slip and I could dislocate a knee or twist an ankle, so I spend hours researching a hike before I go. Information is power, and empowering other disabled people to enjoy the outdoors and improve their quality of life is a meaningful way to spend the time and energy I have available. We have value. We are entitled to live a life that we define.