Guest post by Kate Ten Eyck
I have been married to Noah for nineteen years. When we got married, I knew very little about Ehlers-Danlos Syndrome, and he looked and acted perfectly “normal.” At that point, the internet was in its infancy, and virtually nobody I knew had ever even heard of it. I knew that Noah’s skin was fragile, that his joints were hyper-flexible and could dislocate easily, but what did that really mean? I also had to be careful physically around him, lest I accidentally dislocate his shoulder by falling asleep with my head resting on it. Early on, that actually happened, and I adapted to having a level of physical awareness that was new and disconcerting. I knew that Noah and I were soulmates, but my soulmate came with this mysterious condition. I didn’t really know what to make of that fact.
As time went on, Noah developed chronic joint pain. The occasional dislocation or injury could be frustrating, but chronic joint pain is a whole new level of difficulty. It affects one’s mood, energy level, and ability to focus. At that point, both Noah and I started to learn more about his condition. We went to conferences and met others with EDS. I learned that we were fortunate that Noah was doing as well as he was, others with EDS are completely debilitated by joint instability and pain. We started to wonder, what would life look like in five years? Ten years? Twenty? Would Noah still be able to play the piano in his thirties? How could we prepare for a future that seemed suddenly so uncertain?
Being the partner of someone with a disability has brought out the best and worst in me. At my best, I am the kind and patient nurse. At my worst, I am openly frustrated and cross. The point I always come back to when I feel frustrated is that any day I could become ill or have an accident and become the one who needs more care. Yes, because of EDS there are more instances when Noah is injured and needs care, but he takes care of me as well. Even as someone without any chronic physical problems, I still can have a debilitating headache or get sick with the flu. I really try to be kind and patient, it helps me and it helps Noah. Probably because he has experienced it so much himself, when I get injured Noah is incredibly patient and kind towards me.
The very hardest thing is to see Noah in pain or discomfort and know that there isn’t much I can do about it. The next hardest thing is to tell Noah that I am struggling because some aspect of his condition is affecting me. I know he already feels bad that there are activities that I enjoy that he can’t participate in, and he knows that I wish he could. I don’t want to be selfish, and I don’t want him to feel bad. However, I have realized over time that being in denial doesn’t help either one of us. It’s much better for me to say, “it’s hard for me that we can’t take a bike ride together” than to feel that, not express it, and then just act weird. Sometimes if there is something difficult going on like debilitating back pain, the best thing I can do is talk to a good friend or therapist about it. At that moment, leaning on Noah while he is suffering, and telling him about how much his pain and debilitation is affecting me is just wrong. But it’s important to talk to someone about it. Those feelings are there, and unexpressed they could turn into something ugly. Not only do I need to communicate openly with him, but I need to be honest with myself even when the emotions are inconvenient.
Everyone who lives long enough at some point suffers some kind of injury or disability. I feel like Noah and I have had to learn to cope with human frailty at an earlier age than many of our peers. As a result, I’d say we have developed some strong coping mechanisms that help us in all aspects of our lives. Working through adversity together has only strengthened our relationship, and for that I feel incredibly fortunate.