To my nurse,

For years I have put my trust in you, and now you have betrayed me. Over the years, you have helped me repeatedly with medications, symptoms, side effects, and feeding tube dilemmas. You have scheduled procedures, sent referrals, made calls, and advised me through many trials. You were there when I was diagnosed with gastroparesis and you helped me understand what that entailed. You helped me find diets to try, medications to avoid and ones that may help, and talked me through the endless complications that come along with this condition.You were there when my dysmotility moved into my intestines, when I was diagnosed with EDS, and when countless other doctors all over the East Coast failed me. You have been one of the few constants in my roller coaster journey with chronic illness. Now, you have failed me, too.

You hadn’t seen me in person in almost two years. I know I look different, but in reality, I’ve kept my weight stable for almost a year now. My tube has flipped into my stomach again and I just came in to get it fixed temporarily until we can schedule surgery to place the new one. This is the sixth flip in three months. I understand and appreciate your concern for my health and wellbeing; I know my health is not at its best, but the hospital is not a healing environment and I am more comfortable and much safer (thanks, immunodeficiency!) at home. I told you I did not want to be admitted until we were ready for surgery and that my motility specialist okayed the plan that we discussed (waiting for surgery and continuing tube feeds), so I was set. Although I knew this made you worry, I had no idea you would take it so far.

After hearing that you called my home health nurse and my parents, I knew you were serious, so we compromised and I came to the ER to be evaluated. When I got there, the ER said they wouldn’t help me because I was supposed to be directly admitted. That was the first red flag. Nonetheless, I went up and was admitted. I started TPN just like you wanted, I cooperated. They couldn’t fix my tube. I had to share a room, I was at high risk for infection and my migraines were through the roof. But I stayed. I cooperated. I thought we were all working for the same goal.

In the morning, things got really bad. They told me you had told them I needed to be evaluated by psych for anorexia. I was shocked. I have a severe digestive condition and you want me to be evaluated for an eating disorder? I’ve known you for years, how could you do this to me? This is what I fear from new doctors who are uneducated on my condition and don’t know me as a person, but you? My trusted nurse? I’m floored, heartbroken.

Here’s a list of the things the psychiatrist had been told, all of which are blatantly untrue:

  • I had refused to be weighed at my tube change earlier in the week.
    • I never refuse to be weighed. They don’t weigh me at radiology appointments. If they had asked, I would have done it no problem.
    • I told you my weight voluntarily at that appointment because I had lost 2 lbs over the 3 months that I had had 6 tube flips. Considering the circumstances, it wasn’t too bad.
  • I have been “calorie restricting” at home.
    • You told him I had only been doing half of my tube feeds, which is true. But you told him it was on purpose, when I clearly told everyone it was because I was only tolerating a rate of 50ml/hr and even running it all day I can’t get it all in.
    • I suggested the new feeding tube (Yes, I suggested placing a second tube in my gut for more nutrition—don’t think that sounds like anorexia) so that I can get more feed in. I’m doing my best.
  • I refused lipids in my TPN (the fatty part).
    • I did not refuse any part of the TPN. I fully expected lipids! I just did what they brought me. They didn’t add lipids, so I didn’t do lipids, I don’t make the TPN.
  • I waited 5 days to come in for my tube fix this week.
    • This was the worst one! I called the morning my tube flipped. You schedule the tube changes. You made me wait 5 days.

I knew I would have no trouble with the psych eval because I have nothing to hide. I do not have an eating disorder. I may qualify for “severe anorexia” weight wise because of how low my BMI is, but that in no way means I have anorexia. The psychiatrist listened to me and determined I was not doing this to myself; in his words there had been a “miscommunication” and my weight was explained by my multiple medical conditions. I know this was much more than a miscommunication, but as a doctor at the hospital, the psychiatrist had to respect you and the other doctors as his colleagues.

Eating disorders are real and serious health conditions. No one with an eating disorder should feel ashamed; mental health is just as important as physical health. It is so important to find help when you are struggling with mental health. That said, my illness is physical, and I work so hard to find a healthier state, so to be accused of doing it to myself and not wanting to get better is extremely insulting and upsetting.

Being a young woman with a progressive, chronic illness is extremely difficult. I fight stereotypes and stigmas every day. Situations like this are exactly why I have anxiety about hospital admissions and new doctors. To have this come from you, the nurse I have worked with and trusted for years makes it even more heartbreaking. I’ve seen other girls go through this and I have always been so thankful to have doctors and nurses who know me well and work beside me in trust and understanding.

Although you may have thought what you were doing was in my best interest, you did so much more harm than you realize. You stole from me my safety net and my confidence in the one hospital I have ever felt any trust in. Because of this situation, I fear being admitted with you all again. I am hesitant to even call your office when I have concerns or when my tube is acting up because you are the one I always talked to. I wish you had come straight to me when you had these concerns, maybe things wouldn’t have blown so out of proportion.

I hope you learn from this and never treat a patient this way again. Everyone deserves respect and treating an individual with a chronic illness with bias and judgment is anything but that. I am a person. I work so hard fighting for my health. I want to live and I want to find healing. I want my life back more than anything.

This is the end of your path on my journey. I’m trying to find healing and health and you are no longer a helpful tool in that task. My health may be poor right now, and you may not agree with the plan that’s been set up, but all I want is to be healthy again. I dream of eating real meals, returning to school, being able to run and swim, and no longer relying on doctors and hospitals so much. All I want is good health; I’m sorry you can’t see that.

~RB