Rare Diseases: A Life in the Shadow of Doubt

Growing up, I knew that more than anything, I wanted to be a mom. Long before I had children, I worried about being a good mom. I wanted to give my children a perfect life, therefore, I needed to be a perfect mom. That did not change after I had kids. My children and their welfare came before all else, like most moms I know. When my children became ill with Ehlers-Danlos syndrome the focus of my life became about their care. I would say this about myself as a caregiver/mom: I became extremely knowledgable about Ehlers-Danlos syndrome. I never left my child’s side when they were hospitalized. If I felt my children were not being treated correctly by medical professionals, I would become aggressive. I would ask for tests I thought they needed that doctors didn’t find necessary. I often went to several different doctors because I was looking for a doctor who knew EDS or was willing to learn. I even started a non-profit to change the world for my children and other people living rare.

To me, this list represents the very best a mother can be for a child with a rare or rarely diagnosed disease. To the medical community this represents Munchausen by proxy or Factitious disorder.

At a recent medical conference I attended, Dr. Angela Anderson presented a case study of 72 infants in which the parents were all accused of medical abuse. A stunning 93% of these children were later diagnosed with EDS. The rest were all vitamin D deficient. None of the infants were abused by the parents. None.

In my work as an advocate, I have heard of far too many parents being accused of outright abuse or over-medicalization. Most, at some point, have had a medical professional imply over-medicalization, even when it is physically apparent the child is sick. Many have been investigated for some type of abuse and some have been jailed. The life of a rare mom, unimaginably difficult, made almost unbearable.

I have my own story of false accusations; a false accusation that has left my daughter with medical PTSD and left me unable to even think about that time in our lives without hot tears streaming down my face. I will one day tell our story in all its hellish details. I know telling my story won’t change everyone’s mind. I also know that you don’t have to be formally accused to be doubted by doctors, family, friends and neighbors. Until we recognize that Munchausen by proxy is incredibly rare and that most accusations are false, me and my fellow EDS and rare moms will live a life in the shadow of doubt.