Why Respect From Care Providers Is Crucial to My Eating Disorder Recovery Outcome

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

An eating disorder was the problem, and the weeping edema in my legs was the worst symptom. The doctor refused to prescribe diuretics to stop the constant flood of cold water that had me carrying bath towels around the house to protect the carpet and keep the kitchen tile from becoming slick under my feet. The incessant drip meant carrying extra socks when I went out for the day, and left me sitting at air-conditioned meetings in wet jeans and socks I had soaked myself. My blood pressure was low and the doctor feared the one thing I wanted from my hospital stay might kill me.

The truth was, I was very willing to take that risk. I wanted to live — to teach and tutor, to write, to walk in the neighborhood and woods, to go to the beach, to train in martial arts, to go to concerts, to be present with friends and family and my birds. The edema might not be a dangerous or even particularly interesting medical problem, but coping with and enduring it took every shred of energy I had away from things I wanted to do, including cook and eat. I tried to explain. I knew the cure was weight gain, but weight gain was one more hard, painful task in a pain-filled life. I needed a little relief in order to gather strength to fight back.

One doctor listened to me, and for that I am grateful. He agreed that when I ate better and gained weight the edema would resolve itself. But in the meantime, he suggested reducing my consumption of fluids and increasing both sodium and protein. The edema eased. I had more energy for self-care, including cooking and eating.

I had learned I did not do well in hospitals. So I began outpatient treatment with the only provider who would agree to even try to help me outside of a hospital. The provider had a kind heart and good intentions but no ability to listen. I did not fit the working model in the provider’s mind, and any attempt on my part to explain what was happening in my reality was dismissed as not being able or ready to face reality with a capital “R.” I hung on, relying on to-do and gratitude lists to keep me going. Then a move, the return of weeping edema and a fall put me back in the hospital with liver failure.

This time, the doctors prescribed medication for pain. When one tube feeding failed and I refused a second attempt, the medical doctors realized they were at the end of what they could do for me and let me go home, but with pain relief and directions to find a physical therapist to improve my mobility. Physical therapy and high doses of vitamins improved my physical condition.

I still could not obtain outpatient treatment. But I had tried that, and knew how quickly I deteriorated in such a setting. So I have been trying to get better on my own and am still struggling with my weight and not as strong as I could be and want to be. Still, I am alive, writing and volunteering. I have had trips with my family and enjoyed times with friends. I do not pretend all is well. I am still sick and frustrated at my illness and a lack of professionals I can trust. But I have a life worth fighting for. All it took was professionals who listened and worried about what hurt me as much as the long-term issues of my illness. I believe this approach is sometimes called “treating the whole patient.” I only wish they had been willing to continue, and that all appointments did not turn into attempts to get me to accept inpatient treatments.

With physical illness, often the strategy is to relieve the symptoms sufficiently to allow the patient to heal. During recovery for a broken hip, I had to be the one to tell the nurses when I did not need more pain relief. They wanted me to be able to concentrate on therapy without distractions. Why should it be different with eating disorders? I don’t believe therapy can fully cure a person with an eating disorder any more than surgery could entirely mend my bones. They are both critical, but so is healing, a work that only the patient can complete. There is also an agreement that discharge to home and community as soon as possible will improve outcomes.

Tetanya Pekar writes about the ethics of compelling treatment. She echoes the opinions of many she interviewed in her conclusion, “…. one thing is clear: in all of these cases, those in charge of treatment (or financing treatment) have failed; even just by letting their patient’s disorder get this far.” She mentions lack of access to treatment as the major problem. I agree, and would also add the nature of the treatment is not always conducive to a good outcome.

In the medical community, there seems to be a great fear of denial, a suspicion that to deal directly with quality of life issues will allow the patient with an eating disorder to ignore the consequences of malnutrition. But promises for a rosy future cannot substitute for a meaningful life in the present. And so some of us arrive at the place where death seems inevitable, with nothing but coercion, disrespect and painful treatments between us and the end. We still long for life, but the malnourished spirit can no longer fight for the damaged body. And so we wish to get it over with. But I believe a little relief of pain, a bit more attention to enjoyment and purpose of life in the present, can be enough to let the spirit, and the body, heal.

I invite therapists, doctors and other care providers to run the experiment. Work with those of us who have eating disorders to maintain courage. Do not confuse fighting spirit with denial. You may find resistant patients become resilient people capable of participating fully in the work of healing. You may find new satisfaction in your practice as you assist patients with eating disorders in the slaying of their own demon.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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Thinkstock photo via KTM_2016