Content Warning: Self Harm, Suicide
Note: The story that follows is very personal and quite difficult. Please proceed with caution and compassion.
This is the story about a doctor and nurse I once had and how they “got it.”
“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s a feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.
The phrase “getting it” came from my first time at Stanford’s MedX in 2012. I was there as an ePatient Scholar on the Design Track where we spent a day at IDEO learning about patient-centered design. Most of the day was spent with each patient scholar being the center of a team. The challenge was to come up with a solution (broadly defined) to address one of the things patients faced in our own care. There was one patient per team, one design person from IDEO, and I think 5-6 others per team from all walks of care doctors to business.
The first part of the challenge was literally just having patients talk about their stories. I talked a lot about my medical history and how I’d had a number of difficulties but that I’d had a really good doctor and nurse. I talked about how we needed more of that in our care. When I was asked what made a good doctor, I kept saying that it’s someone who just “gets it.” And that my doctor just “got it.” That’s what we focused our solutions on that day – how to help doctors “get it.” (You can see my teams presentations here).
Apparently the day really stuck with one of the doctors, a cardiologist. He started talking about it when he was asked to be a presenter and told people that the idea got him to start asking himself whether he was “getting it” at each appointment. He even asks patients if he “got it.”
Whenever I describe “getting it,” I talk about the how doctors and nurses can have compassion and go beyond traditional care. What’s not in the story are the real details of how it began.
In January 2010, I first came to see Dr. V, I went to get antibiotics because I self harm and I had an infection. Years before, my endocrinologist taught me exactly how to assess my cuts for infection and when to seek help. I’m an expert in my own wound care which has served me well as it’s beyond difficult to ask for help. Rarely do doctors believe me when I say I know what an infection looks like. They want to see them, not capable of trusting my judgment. The doctor before Dr. V had been so insistent that I had a full on panic attack. But I knew I had to go.
Since I was a new patient, I’d filled out all the background paperwork, including my type 1 diabetes and HbA1c. And upon entering the exam room, as always happens with doctors, his first comment was that my HbA1c was high. I explained diabulimia a little and told him that wasn’t why I was there. He acknowledged my concern and didn’t push.
Again, as with every doctor, he asked if he could see them. I said no. He asked why not. I barely eeked out something about abuse and he said, “I got it.” He didn’t make me show him. Somehow he knew what was so terrible and he didn’t force me. He believed me and he saw the trauma in my eyes. He wrote the prescription and as I was walking out, he gave me his card and wrote his email on it. He told me he wanted me to email him once a week to check in. And that started emails for the next 4 years that saved me in many ways.
When I went to the hospital for DKA almost 3 months later, he was compassionate.
When I had a suicide attempt 2 months after that, he did everything he could to connect me to emergency services. I told him to let me go. He said he couldn’t do that as a doctor.
When my therapist dumped while I was in the psych ward after that suicide attempt, I called his office crying. Nurse J answered. I asked her if he was going to leave too, if I was too much. Nurse J sat on the phone with me and assured me they wouldn’t leave. That they cared too much.
A year later, I wrote about my past. The only time I’ve ever written in depth what happened. It was the 10 year anniversary of leaving home to escape my abuser. The cutting got worse. I let him see the cuts this time because they were deeper than ever before. He put stitches in them. Nurse J held my hand while I cried.
About 9 months later I OD’d on insulin and pills. He and I came up with a plan. He would hold on to my short acting insulin, I would come in once or twice a week to fill up part of a pump reservoir (used to wear a pump but we decided with the OD’ing and eating disorders that it was probably best to stop. I still had some supplies though). By filling up the small reservoir, I wouldn’t have access to bottles and bottles of short acting insulin so I couldn’t overdose. He held on to my syringes so I couldn’t stock pile insulin. He held on to my lancets too.
I started coming in every week. No appointment. Nurse J would see me back to the procedure rooms and she’d watch me swap out the syringes and fill up the vial. She’d ask how I was. She’d make sure I was okay. She’d tell me about her adult kids. She even brought me shoes. We had the same size feet so she had some that she didn’t like but were really nice, so she gave them to me. Nurse J was a rock. As time allowed, Dr V would check in, too and always answered questions or concerns I had.
I lost my health insurance around the same time. Yet, they continued to treat me pro bono. Again, no appointment. Just dropping in once or twice a week.
When I broke my foot a few years later and couldn’t afford crutches, my friend drove me to the office and Nurse J came out with a wheelchair to bring me up. Dr. V took xrays and gave me crutches and a boot for free.
When I was in the hospital, he visited, personally speaking to the hospitalists assigned to my case.
When I got pneumonia and couldn’t get an inhaler or afford antibiotics, Dr. V found some for me (they didn’t take pharma samples, so he had to source it from elsewhere).
They supported me in my endeavors – the many jobs I took on and lost, the advocacy efforts I pursued, my speaking engagements, and all my triumphs and failures. And then they helped me apply for disability when we all realized that I was too sick.
Since I had no insurance (and Texas didn’t expand Medicaid) Dr. V had to be every specialist for me – he took on the roll of the dozens of doctors I have now. Nurse J was his backup.
We talked about books and families and the kids I babysat. We talked about hard things and not so hard things. Dr. V tried to help me see what happened to me in the past was wrong. He didn’t pity me or try to empathize with something he knew he could never understand, he had compassion. He once asked me to read The Catcher in the Rye. When I’d finished it he told me why:
So many times, I saw you as Holden Caulfield. A really good person that, at times, refused to see the world for what it was despite how you were treated. How you care for your kids and wanting to stop them from suffering any of the ways you ever did. How much you care for those around you and your selfless acts towards everyone you come in contact with. It was really the image of the title of the book—I could see youas the catcher in the rye field trying to protect the innocence of your kids and at the same time, you, as one of the kids wishing someone had been there to prevent you from going (being taken) over the edge.
In those years, Dr. V and Nurse J became close friends. Their practice became like a family. I knew everyone in the office. I knew their families and their interests. I cared about them and they cared about me. I even did HIPAA training for the office.
They were my family.
I was approved for disability in December 2014, nearly 4 years after I started seeing Dr. V and Nurse J. Unfortunately, I couldn’t see them anymore because now I had Medicare and the office didn’t take Medicare. Their office was also changing and I knew it was probably time to try to move on – see all those specialists I should have been seeing and relieve the office of having to treat me pro bono.
And then my heath went downhill, my mind even more so. I hadn’t had a suicide attempt in years. The cutting had drastically decreased. I was surviving and functioning. But soon after I left them, there were 2 surgeries. A year later, the first suicide attempt, followed by more that year. Dr. V and Nurse J had saved me for years, but now I had my insulin and they weren’t there to help anymore. They couldn’t protect me. I had no one to check in on me.
No doctor wanted the liability of holding my insulin. No practice wanted the burden of my complex care. No providers wanted to see me as a whole person. No one wanted to take the extra effort to keep me alive and functioning.
No one will measure up. I know that. I don’t expect others to, but part of me still wants it.
I still carry emails from Dr. V. I still wear the shoes Nurse J gave me. I still have a card from both of them from the first birthday after my grandma died. I still think of them constantly. But now I’m alone and I don’t have any doctors or nurses who can help or want to help. They all practice “Not My Problem” healthcare. They talk about how burnt out they are and how difficult patients make their lives. They talk about billing and time pressures. They recoil when they read the long list of problems I have. They don’t want to know any of the details. Their is judgment and misunderstanding and impatience. There is blame and not hearing. There is pain… So much pain.
A pain compounded by the fact that I know it doesn’t have to be this way. Yet it all seems like fiction now, a story instead of a reality.
I once knew a doctor and a nurse who “got it.” They understood deeply that I needed care and they did everything they could to provide it to me. We need doctors and nurses who “get it.” Maybe they can’t do as much as Dr. V and Nurse J but they can do something. They can act so that patients feel heard and understood and valued. So patients can know that someone sees them and won’t let them go no matter how difficult they are. So patients can know that someone wants to heal them and not hurt them anymore.