How I'm Using My Own Diagnoses to Honor My Late Mother This Christmas
My mother’s birthday is on December 19th, right before Christmas. I am not able celebrate in person with her anymore, as she passed away almost three years ago. I miss her terribly and I still have moments of profound grief. I still need her as much now as I did when I was a child. Perhaps I need her more. I remember my first surgery after she passed away. In recovery, I was crying for my mother. The memory is hazy, but I do recall the nurse telling me she would get her for me. This response prompted more tears, as I explained that she could not retrieve my mother. Even as a 36-year-old woman I still desire my mother to teach, comfort and support me. Unfortunately, she was sick with many chronic illnesses, some undiagnosed. So, this year I have a different type of present for her as she watches over me and my family.
One of my illnesses is a genetic condition called Ehlers-Danlos syndrome. It causes my body to produce faulty collagen and it affects every system in my body. Nothing is exempt from the effects of EDS. For years I fought to find out the cause of my seemingly random and unexplained medical issues. This was something I watched my mother go through most of my life. I cannot recall a time in my childhood where my mother was not ill. There was even less known about EDS 20 or 30 years ago, so she struggled. She was told it was all in her head and she was experiencing hysteria (otherwise known as conversion disorder). The doctors misdiagnosed, mistreated and dismissed most of her illnesses and symptoms. She was put on so many different medicines at the time that she began having grand mal seizures. Those were extremely scary events to witness as a child.
I remember being shuffled to and from doctor appointments and trips to the local family-owned pharmacy. I remember sitting in bed with my mother and brushing her hair when she felt bad. I remember her despair over not knowing what was wrong with her. The doctors were able to pin down secondary diagnoses but never grasped the big picture of why all these things were happening. My mother had most of her large intestine removed, her pancreas, gallbladder, spleen and her stomach rerouted. She had gastroparesis and diabetes. She would go through periods of dehydration so bad she would go to the hospital just for fluids. She used to tell me that sometimes all she needed was IV fluids and she would feel so much better. She had malabsorption issues and struggled with almost every medication she had to take by mouth. Separately, these things mean very little, but if one of her many doctors had tried to look at the big picture, maybe she would not have passed away without being validated in her symptoms. She would have known it was not all in her head.
I am writing to tell you it was not all in your head. For Christmas and your birthday, I am giving you my diagnosis. Early this year, I was diagnosed with Ehlers-Danlos syndrome, Chiari malformation and dysautonomia. By fighting to find my own answers, I have stumbled on answers to your medical “mystery.” I can see much clearer now that I understand why my body does what it does. Which, in turn, has allowed me to look at the struggles you endured while you were alive. The answers have become so clear!! You most likely had EDS as well. I can check off your boxes for POTS (postural orthostatic tachycardia syndrome) also. I know these diagnoses may come a bit too late, but I know it means something to you that I found answers for the both of us. I will keep fighting for my health and for the health of your two grandchildren.
I am sorry you struggled so much while you were alive, but I promise you, I will never let a doctor dismiss or shame me. I will never let this happen to my two young chronic illness warriors. So, merry Christmas and happy birthday. I hope you enjoy your honorary zebra stripes.
I know there are a lot of us who struggle on the road to diagnosis. We deal with sadness, anger and depression. Our physical pain can be overwhelming. However, you are not alone. We can fight this together. My mother would be so proud of me and how I am embracing my new normal. Helping others in the same situation has been so fulfilling. Writing about my experiences and reaching people trumps any of my bad days. I volunteer with Dysautonomia Support Network coordinating The Writers Club and Blog, so if you feel like this inspired you to be a part of a community like that please pop over and join us. Your experience could be so helpful to someone else. It truly takes the sting out of facing an incurable illness when you know you are not alone.
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