I was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2012. What’s that, you say? Well, let me take you down this road with me a little while.
First of all, EDS is genetic, it’s degenerative, and it’s a chronic pain condition. Not too fun, right? It’s only going to get worse with time, and if I have children, I risk passing this painful condition on to them.
EDS is a connective tissue disorder. The connective tissues in your body are made up of a protein called collagen. Collagen is present in your bones, muscles, tendons and ligaments, cartilage, organs, and skin. Basically all the things that hold you together. I recently found out that collagen is also what is wrapped in fibrous coils around your nervous system. For people with EDS, there is a collagen deficiency. So all those connective tissues (any area that contains collagen) in the body are not not very strong for a person with EDS.
There are 6 types of EDS. I have type III (Hypermobility Type). Most of my joints are hypermobile and quite loose. This results in frequent dislocations and subluxations (where the joint dislocates but pops right back into place without needing to be “put back into place”). I primarily experience subluxations, but they are still highly painful. The joints most affected in my case (this condition varies dramatically in terms of what is affected most) include: jaw, neck, shoulders, spine, ribs, hips, knees, and ankles.
Sorry to sound like a textbook or college paper here! It’s a whole lot of information, and it may be hard to understand. It’s not a very common condition, and it affects areas of the body that many people don’t have a lot of knowledge about. Several of my organs (and/or organ systems) are also affected. My bowels, bladder, and uterus are most affected. I’m lucky that my heart is not affected too badly. Many people with EDS have numerous heart problems. I have irritable bowl syndrome (aka we don’t know what’s going on with your bowels, so here’s a diagnosis) and interstitial cystitis (a painful bladder condition that affects the inner lining of my bladder wall). These conditions are not necessarily associated with EDS, but it makes sense to me that if the collagen in my organs is deficient, that could cause some of these other disorders.
So how does this affect my daily life? I am constantly in pain. My back, hips, and knees are almost always hurting and that makes it difficult to do anything. I struggle with chores around the house (dishes in particular are difficult). I have trouble with reaching, lifting, being on my knees, going up a set of stairs, standing for long periods of time, or carrying heavy objects (for example, lifting a heavy pan from a shelf above my head causes serious pain and dizziness). This makes it hard to have a steady consistent job. I am working 12 hours a week at a job that doesn’t require lifting, standing, or being anywhere at an early hour. My hours are flexible and I make my own hours.
So that’s a brief explanation of EDS. It’s a chronic pain condition. And it’s a condition that many people aren’t aware of. So my main goal is to spread more awareness.
“I’m past patiently waiting, I’m passionately smashing every expectation, every action’s an act of creation.” -Hamilton: An American Musical