In January 2014, I went to the doctor with pretty severe wrist pain. Visits like these were not (and still aren’t) uncommon. I thought I knew exactly how the appointment would go: I would point to where it hurt, they would take an x-ray, they would tell me there was no problem, and they would send me on my way with a little less pride and a little less money. I was no stranger to this system. But this appointment was not as expected. After the x-ray, my doctor came back in with a puzzled look on her face. “Does your thumb hurt? It- isn’t where it should be.” And this, friends, began my long and (so far) difficult journey to loving myself with a chronic illness.
The Ehlers-Danlos Syndrome National Foundation defines EDS as “a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility.” Oh, yes. Suddenly the previous 19 years of my life made sense. Every ache and pain, every sprained joint, and every mysterious bruise could suddenly be put into a cute little zebra-print storage bin in the corner of my room. I could finally fold up my “crazy” rug and sweep my symptoms into a pile, to be put in their proper home. It was a lovely thought, one about which I had often fantasized, and an even lovelier reality. But, then what? What happens after the “it wasn’t all in my head” high?
My mother taught me to love my body. She taught me to see myself as beautiful in every aspect. I grew up loving my body. When I was in middle school, I used to stand in the mirror and flex my legs, admiring their definition. When other girls started straightening their hair, I didn’t understand because I loved my frizzy hair just the way it was. In this way, I was very fortunate. But, at a somewhat early age, I had to face another challenge entirely: how do you love a body that doesn’t seem to love you back? I remember the first time I realized that I was the only one of my friends still getting “growing pains.” When I would complain about these pains, my friends would tell me that I was probably just still growing. I would pretend to agree. When I would get dizzy, people would tell me that I just stood up too quickly. I would pretend to agree. When my knees would buckle as I was walking to class, my friends would tell me I was clumsy. I would pretend to agree.
I realize now that I never really loved my body. Sure, I loved her in a superficial sense. I thought she was beautiful. I still do. But I didn’t really love her. In fact, I resented her. I was scared of her. I was in a toxic relationship, and I could not escape. I was angry at my body because I didn’t think she loved me. I realize now that I just didn’t understand her love. My body loved me enough to let me play volleyball for seven years and basketball for nine, before making my hips too wobbly to run down the court. My body loved me enough to let me get up out of bed, even though she was working harder than I knew. My body continues to love me this much. It is the least I can do treat her as she treats me.
This journey to self-acceptance has been anything but easy. It is human nature to have hope. Hope is an absolutely beautiful thing. But, to someone with a chronic illness, hope can be dangerous. When I dislocate a hip, people tell me to “get well soon,” which is a lovely gesture. It is also something to which I certainly cannot commit. Telling a chronically ill person to “get well soon” is, though very well intentioned, not exactly comforting. Chronic illness means the opposite of getting well soon. An important part of loving yourself with a chronic illness is learning how to be well without being well. It is learning to love your body, even though she fails you every day. Loving yourself with a chronic illness means learning to get better without really getting better. And I am beyond happy to say that I understand this now. I can say now that I love my body. I appreciate her for exactly what she is. My body is a warrior. She is strong, despite her weaknesses. Her creativity astounds me. And through all of this, I have learned, perhaps most importantly, all of the ways she loves me.