Always Trust Your Gut – Even If You Have a Mental Illness
I have been to treatment for an eating disorder over 10 times in the past 10 years. I’ve had mixed experiences, some great and life changing, and others that have been traumatic and life threatening. When I’m at my worst, most vulnerable place, when I can’t feed myself and am desperate for help, I entrust a treatment center with my mental and physical health and I expect to be treated with compassion and care.
However, that doesn’t always happen. This last month, I was at one of the top eating disorder treatment centers in the country: a place I’ve been two times before and had OK experiences at. This time was different though, and I could have died from medical complications that were ignored despite me advocating for my needs.
In treatment this time, I was diagnosed with cyclical vomiting syndrome by therapists due to vomiting over 15 times a day. But I was never allowed to see the medical doctor. I was told my vomiting was a result of conversion disorder and I needed to eat food by mouth (despite having gastroparesis and visceral hypersensitivity and being completely tube dependent), and was told I just needed to do trauma therapy and I would stop vomiting.
My vomiting has been continuous with no breaks or relief for 10 years, and when I mentioned to my gastroenterologist that this treatment center was saying it was cyclical vomiting syndrome she did not agree. But I was at their mercy, and my team (therapist, psychiatrist and dietitian) would not listen to any of my outpatient providers, despite my outpatient team reaching out multiple times.
During the second week I was there, they room-based me, which meant I couldn’t leave my room except to get medications and to go to the bathroom. I was told it wasn’t a punishment, but rather it was to “reduce shame of puking in front of others.” I was not allowed to socialize with my peers. I remained room-based for three weeks, not allowed to go outside, not able to see the snow falling or sunshine due to the glass being frosted over with some sort of textured glass. I continued to vomit despite my team telling me reducing stimuli would help reduce the vomiting.
Eventually, I was discharged because I refused to eat orally (as per my outpatient team’s request). I knew my body and I knew I could not even digest my own saliva, acid and bile, so I knew I would just throw up if I took anything by mouth. Despite coming to treatment with a letter explaining they would not force me to eat by mouth and would not make me take pills by mouth, and that I would be tube fed, they tried to convince me almost daily that I should eat. They even made me take three of my pills by mouth (all of which I would vomit a few hours later).
After four weeks of being invalidated and isolated and told “you are more capable than you are acting,” I was discharged because I had gone two weeks without using eating disorder behaviors and was refusing to eat orally. I discharged on Tuesday, November 5. I flew home with my dad, vomiting the whole way home across the country. I went to my therapy and dietitian appointments the next two days and vomited the entire sessions.
My outpatient team was very concerned and furious that I had been treated so poorly at the treatment center. I told my dietitian I had to be in recovery now because I could never go back to a treatment center after that horribly invalidating experience. Before I left the treatment center, I was told if I ever came back I would be forced to eat by mouth despite my chronic illnesses. They told me I had nothing physically wrong and it was “all psychological.”
By Friday, November 8, I was vomiting straight blood and called my parents in a panic and begged they take me to the ER. On my last day at the treatment center, my therapist made it very clear in family therapy that I should not do anymore medical tests because I needed to work on therapy instead. My mom didn’t want to take me to the ER on a Friday night because we’ve had so many disappointing experiences, but I begged her as I puked more and more blood.
As soon as I got to the ER, I was taken right back to a room and the doctors ordered a CT scan with contrast to rule out a ruptured esophagus. Luckily, the test came back normal. Once those results came back, doctors came into our room and told us they didn’t feel comfortable discharging me and that I was going to be admitted. Again, my mom didn’t want me to be admitted, still abiding by the treatment center’s suggestions. However, the lead ER doctor came into my room a few minutes later and explained that my hemoglobin had dropped significantly and they needed to keep me for observation until the next morning when they would do an endoscopy to figure out where the blood was coming from. She also told me to stop my feed and wait until the endoscopy results came back. She talked to us with respect and compassion and was able to explain things in a way that my mom understood and felt comfortable having me admitted.
The next morning, the GI doctor came in and explained that he needed to do an endoscopy to check for ulcers and tears. They didn’t see anything on the test, which meant I probably had a Malory-Weiss tear (a tear that closes up again once you stop vomiting). They then told me my kidneys were struggling due to chronic dehydration from the vomiting and not being allowed water at the treatment center because I was vomiting it up, and they refused to increase my water flushes. My potassium was low and I required IV potassium. They checked my liver levels and they were elevated, so they wanted me to get an ultrasound to rule out gallstones, but were fairly sure that the high levels were due to all the vomiting. I was anemic, but they didn’t want to give me iron due to more potential GI upset, so when I go in for bi-weekly IV fluids they will likely order iron to be infused as well.
They pumped me full of fluids and electrolytes, and started me on a different feed formula at a very low rate. It was the feed I was on before I went to the treatment center and had tolerated just fine. I had been told by the treatment center that their formula wasn’t any different than the one I was on, however this was absolutely not the case. Every eight hours the hospital increased the feed by 10ml/hr until I got to my goal rate without vomiting. I didn’t vomit again while I was at the hospital. The doctors said I was having a severe reaction to the feed formula the treatment center put me on, and experiencing re-feeding syndrome, and the rate and calorie density was too high for my body to handle.
On Monday at noon, I was at goal rate and was discharged. I’ve only vomited three times since then. I saw my GI doctor yesterday, and she confirmed I do not have cyclical vomiting syndrome. And she said she would refer me to a GI specialist in Boston due to my complex case.
While I was at the treatment center, I was told again and again that the rate of feed and the formula wouldn’t cause vomiting, and if I just ate food I’d get better and the vomiting would stop. My gut told me they were wrong about the diagnosis. They weren’t listening to me when I told them I was dehydrated and needed more fluids, and that I couldn’t eat by mouth or things would get worse.
My outpatient team is horrified by how poorly I was treated at the treatment center. My psychiatrist told me she is amazed my body survived the month I was in their care because of how acutely ill I was upon discharge. She also said the psychiatrist at the treatment center would not listen to her when she reiterated that I could not eat by mouth and if they forced me to, it would cause more issues. My outpatient dietitian told me that during a team meeting between the treatment team and my outpatient team, the psychiatrist at the treatment center actually left the phone session because she got so mad.
Now I am home and doing a thousand times better. I have vomited only three times since being home from the hospital, and while I am not yet getting as many calories as my body needs because I have to increase very slowly to not induce re-feeding syndrome again, I still feel so much better.
The whole time I was at the treatment center I knew things were bad, and I knew I needed medical attention because I was vomiting dried blood and was severely dehydrated, but I was told over and over again that I was wrong and it was just my eating disorder wanting to avoid eating food. I was told by a dietitian that “a J -tube is a pretty extreme response to having an eating disorder,” completely dismissing my chronic illnesses. I do believe the treatment center treats eating disorders well; however, they do not know much about chronic illnesses, and they could have killed me accidentally due to medical negligence. I am grateful to be in a headspace that is clear and motivated, and determined to never relapse again, because with my chronic health issues I have no place to go if I relapse.
Just because you have a mental illness does not mean you aren’t a good advocate for what you need. I’ve learned from this experience that I can trust my gut instincts even when professionals disagree, and that I must speak up for myself no matter what mental illness I’m struggling with. I am grateful to be home, and I’m grateful for the hospital who treated me two weeks ago, because they figured out why I was vomiting so much and even mostly stopped the vomiting.
If something feels wrong, you’ve got to speak up. Only you know your body best. Just because you have an eating disorder does not mean you are “crazy.” It does not mean you don’t deserve to be treated with respect. And it does not mean you are always wrong and the professionals are always right. Trust your gut.
Image via Adele Espy.