SMA Syndrome in Eating Disorder Recovery
By: Erin Harten (she/her), ANAD Volunteer
Erin is a dedicated cancer researcher, mental health advocate, friend, family member, and runner. She graduated from Dickinson College in 2019 with Bachelor’s degrees in Neuroscience and Biochemistry & Molecular Biology. She recently shared her story “Fighting Anorexia & Finding Hope in the Color Yellow” in the ANAD JourneyED series. In recognition of Disability Pride Month, she is opening up about her experience with SMA Syndrome during recovery.
A way, way later problem...or maybe not.
While struggling with my eating disorder, I was always told to be careful, to keep my future in mind. Everything the eating disorder was having me do to my body would physically harm me in the long run. At the time, I shook off that idea, thinking to that myself it wasn’t true and that if it were to be true, it would be a “later” problem. A way, way later problem that an older and wiser version of myself could fix in an instant.
Never did I think that I would be affected by any physical ramifications down the road after I considered myself to be recovered, nor that the “older and wiser” version of myself was actually only “three years into recovery, older.” And how about that the “three years into recovery, older” version of myself would in reality take 8 months of severe gastrointestinal distress to finally receive a diagnosis? Never. All of this, however, is what turned out to be true.
The damage was done.
It turns out that acting on eating disorder behaviors really did do damage to my body. One of the changes that occured is on the anatomical level– a change in which the fat pad that typically surrounds your duodenum is reduced, causing the duodenum to be flattened between your aorta and superior mesenteric artery. Why does this matter?
It matters because if the duodenum is abnormally narrowed, food will encounter difficulty traveling down to your stomach with the same effectiveness and at the same rate as usual. It matters because when someone’s duodenum is narrowed, it causes pain, nausea, vomiting, and weight loss, among other symptoms. I can tell you that this is extremely uncomfortable, and to make matters even worse, the physical symptoms were not even the most difficult part of my experience. Getting a diagnosis and receiving treatment were.
I wasn't relapsing.
When a patient with a history of an eating disorder presents with abnormal nausea, vomiting, and weight loss, the first assumption, by most practitioners, is an eating disorder relapse. But I wasn’t relapsing. My symptoms were by no means a result of eating disorder thoughts and behaviors. Especially given that I truly loved my recovered life. I didn’t want to be spending it missing out on time with friends and family, being unable to travel, unable to engage in my usual daily movement, etc. I wanted to live, to eat, to work, and to simply move on with my recovered life.
It took months of testing, of different doctors, of self-advocacy, for me to finally receive a diagnosis– Superior Mesenteric Artery (SMA) Syndrome. Then, it took about a month to finally get treatment–a brief hospitalization and nourishment through enteral nutrition to restore the fat pad that had been diminished back when I was suffering from the eating disorder, and that had never fully returned. It was not an easy ordeal. It took time, patience, and remembering the main reason that I was going through the treatment–to be healthy enough to finally fully enjoy my life again. As the fat pad was restored, I gradually stopped having most symptoms.
Even after my diagnosis and the corresponding treatment, I still struggled with the medical system. I was gaslit into believing that my whole experience was not valid, that my diagnosis wasn’t real, and that everything had been “in my head.” I was even referred to an eating disorder clinic at a follow-up appointment after receiving treatment for SMA Syndrome. So, even though the fight was won with respect to my physical health, mentally, I still had to process the feelings of constant dismissal I had been facing, with the help of my therapist and psychiatrist.
Speaking up and finding hope.
Though it was incredibly difficult to endure this journey, today, I am grateful. I am grateful for my health, for my recovery both from my eating disorder and from SMA Syndrome, and for my ability to live my life. I am grateful that I now know the early warning signs of SMA Syndrome returning and have the capability to act quickly. I am grateful for my past self fighting so hard to get the care that she deserved, in a medical system that does not always look kindly on those with histories of mental health struggles. And I am grateful for this platform, to share my experience with you.
I hope that from this, you take away the fact that eating disorders can have drastic negative effects on your mental and physical health, sooner than you might expect. That you may have to advocate for yourself in a medical system that feels impossible to navigate, but that it CAN be done and that you can find answers. And I hope you know that whether you’re struggling with an eating disorder, supporting someone with an eating disorder, struggling with a chronic illness, or supporting someone with a chronic illness, there IS always hope to be found.
