Facing Chronic Illness Treatment as a Survivor of Medical Child Abuse
Editor's Note
If you have experienced medical trauma, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741741.
Even as a young child, I always seemed to have some medical issue going on. I remember being in kindergarten and telling the school nurse about how I was unusually susceptible to strep throat. As I got older, the diagnoses piled on: An autoimmune condition, migraine, an immune deficiency, gastrointestinal (GI) issues… the list seemed to go on forever. By middle school, it seemed like I lived in hospitals. I was going several states away for doctor appointments regularly, I had infusions once a month, I never went more than a year without getting hospitalized. By age 16, I was on 56 pills a day.
As an adult, I eventually realized I was a victim of Munchausen syndrome by proxy, a type of abuse where a caregiver intentionally makes the victim ill or fabricates illnesses that never existed. I got off a lot of medications, and having cut contact with my abuser, my health was the best it had ever been. Finally, I didn’t live in hospitals anymore, I didn’t need routine infusions, I was able to go years without being admitted to the hospital.
Still, I had a few lingering symptoms that had never been addressed during my childhood. Now dealing with the effects of medical trauma, I did my best to ignore them and hoped it would all go away, terrified to lose this newfound life as a healthy person I had discovered. Eventually though, the symptoms became more and more problematic, and one by one, I was forced to seek medical attention for them.
New diagnoses began to pile on. Fibromyalgia, arthritis, postural orthostatic tachycardia syndrome (POTS), asthma, endometriosis, attention-deficit/hyperactivity disorder (ADHD). Pretty quickly I began to need more and more medications, more and more treatments and more and more medical attention. It felt like I was going back to the life I’d worked so hard to get away from.
“This isn’t supposed to be how this works,” I’d think to myself. “I’m supposed to be healthy now.”
I reached out to a group of other survivors of Munchausen by proxy for support. “I’m too freaking young for all of this. I’m too young to be dealing with any of this, far less on my own.” I said. “I’m scared and hurting and I don’t know what to do about any of it.”
Instead of finding the support I’d hoped for, I was bombarded with other survivors telling me doctors were never to be trusted, and I needed to stay away from medical care at all costs now that I knew what had happened to me.
Feeling even more isolated, I moved on, trying to navigate it all on my own. I got accommodations at work and school. I told my doctors there were some treatments I just couldn’t handle, that I couldn’t take pills more than once a day, that I needed them to listen to me or I’d find new providers.
And if I’m being honest, it’s still terrifying. It still feels like I’ve allowed myself to return to the life that made me miserable for so many years. I’m so afraid of it consuming my life the way it used to. Still, I try to remind myself this isn’t the same, that this is medical attention I need, that I have providers who will listen to me now, that no one can force me to get care I don’t think is best.
And, for the first time in my life, I have providers who I feel like I can be honest with, because I know they’ll be honest with me. I take meds once a day almost every day, even the ones prescribed twice a day. I tell my doctors when it’s getting to be more than I can handle. And I know I’m not a perfect patient, but I’m doing the best I can, and that’s what matters.
Unsplash image by Allef Vinicius