I Was Turned Away From Every Eating Disorder Treatment Center Because of My Chronic Illness

This time last year, I was able to confidently say that I was fully recovered from my eating disorder (ED). I felt like I was finally actually living life and confident with who I was. I had finally felt recovered and was so proud of what all I had achieved and done. I was working towards some big goals and for the first time in my life, I actually had hope for my future and could actually see myself getting there.

I also have multiple chronic health conditions that have had a serious impact on my life and the way I have to live my life. One of the ways it has impacted me most is by causing something called esophageal aperistalsis. Basically, this means my esophagus is paralyzed. As a result, I have become dependent on a GJ feeding tube. This is a tube that was inserted into my stomach that then passes through my stomach into my small intestine. I am then fed through that tube and the formula goes directly into my stomach. I can still eat some food as well, but I can really only take in small amounts of liquids and soft/pureed food that is able to be taken down my throat by gravity. I have to be careful though because sometimes my trouble swallowing leads to aspiration, where the food goes into my lungs instead of my stomach.

Little did I know, my two illnesses would end up in a war against me, and this time there would be nowhere to go for help getting out of the dark hole.

Back in November, I contracted clostridium difficile (C-Diff), which is a serious infection of the colon which leads to severe diarrhea, weight loss and for some patients, like myself, it leads to something called post-infectious irritable bowel syndrome (PI-IBS). As a result of the C-diff and PI-IBS, I lost a drastic amount of weight in a matter of six weeks. My eating disorder had nothing to do with the weight loss this time around, but that didn’t stop my ED from taking the chance to join my struggles as my weight got down to an all-time low. I didn’t lose the weight from the ED, but it definitely came in and is preventing me from being able to get back on track with my tube feeds and gain weight.

I want help to get past this bump in the road, so I can get better and start living my life again. I want to not be living my life knowing that I am at risk for more serious health complications as a result of severe malnutrition. I have been working very closely with my registered dietitian, therapist and doctor to try and get the help that I desperately need. At this point with where things are at, I need treatment in a treatment center to help me get back on track and to help avoid/treat something called refeeding syndrome, which I fall under the extremely high-risk category for developing it. We have reached out to more than ten treatment centers to try and get me admitted only to be denied from every facility including the one where I was previously treated.

Treatment centers have turned me away for a few different reasons and one that they all had in common was my complex chronic health condition. Several turned me away because of my feeding tube and the others turned me away because I was at too high of a risk for developing refeeding syndrome and they did not feel they could provide me with the proper level of medical monitoring/care if I was to develop it. Refeeding syndrome can lead to death if not treated correctly which is why it is important to begin the refeeding phase with close monitoring.

Eating disorders are surprisingly common in those with chronic health conditions, especially those with Ehlers-Danlos syndrome (EDS). Unfortunately, it is also common for those with complex chronic illnesses to struggle finding a treatment center to treat their eating disorder and those who do find a place willing to take them often have to face battles with their treatment team telling them that their problems are all in their head. It is not uncommon for disorders like EDS to be dismissed as a psychosomatic disorder where the symptoms are caused by their mental health. This can lead to patients like me leaving treatment with post-traumatic stress disorder (PTSD) from the experience with how their chronic condition was treated, and for them to leave treatment with their chronic illness completely out of control due to the center’s refusal to continue therapies/pain management that the patient admitted on. This as a result leads to an increased chance for relapse into the eating disorder. Those who are not lucky enough to find a treatment center willing to take them with their condition often end up developing what is considered a chronic illness which in time does have lasting health implications and can even lead to death.

Eating disorder treatment centers need to start educating themselves on chronic illnesses like EDS and the need to stop denying patients like myself care. A treatment center or a treatment track at different centers needs to be created for those battling eating disorders in addition to their chronic illness, so that we can get proper care and have a chance at full recovery. Developing a chronic illness track or facility would allow treatment centers to tailor the treatment to meet the needs of those patients and it could help eliminate some of the barriers that prevent the centers from accepting those patients in the first place. Being denied treatment from every treatment center huts. It hurts really bad to know everyone turned you away and that without formal treatment, you aren’t going to get better.