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The Emotional Support Chronically Ill Patients Need From Their Health Care Services

I really didn’t expect to start crying in the middle of my neurologist’s office. I was there for a procedure which had been variously described to me as “not that big a deal” and “excruciating” by those I’d queried, and I was apprehensive about it. I’d referred to the procedure as the “scary test” on my calendar because it was scary to me, but for the most part, I was simply treating it as one more thing to get out of the way.

I waited for the neurologist in an exam room, where a large, happy-looking ceramic dog, which appeared to have been painted by a child, sat on the counter next to a green tyrannosaurus rex with a toothsome grin and a model of a human brain. I was already on edge because I’d had a bad journey to the doctor’s office on paratransit, with a driver who had used the trip as an opportunity to give unsolicited medical advice and express his prejudices toward specific groups of people.

As I ruminated on the procedure I was about to have, I found myself cringing at the thought of the needles. The nurses had already shown them to me; they were large. And then I found myself crying, and I couldn’t stop.

I ended up having a full-on panic attack, sobbing my eyes out and hyperventilating for the better part of an hour. It didn’t make sense to me. I hadn’t had a needle phobia since I was a kid. I’d had so many blood draws and IVs that I’d lost count, I’d sat without tears through several tattoos and I’d administered prescribed injections to myself in the past, but for some reason the mere thought of the procedure needles was inducing mortal terror in me. When I was finally able to talk with the nurses, I asked them, “What can I do to make this easier?”

They didn’t know.

The neurologist reacted with compassion. She decided the procedure wasn’t necessary, fully discussed my case with me, and actually stayed after closing time so we could discuss a treatment plan. I was very lucky. Some patients are not.

However, when I told this doctor I was feeling overwhelmed, she didn’t have any suggestions on how to handle it. There weren’t any wellness centers for chronic illness to which she could refer me; there wasn’t a social worker or case manager waiting in the wings to steer me toward complementary care or counseling that was specific to my condition. I was on my own if I wanted to track down any of those services, and my options would be limited.

Unfortunately, when you’re an adult, that’s usually how it goes. Whether it’s an acute or chronic illness, a one-time operation or the latest in a long string of surgeries, adult patients usually aren’t given a lot of help in dealing with medical stress and anxiety. While there are some exceptions, for the most part, the health care industry seems to believe that when adults are thrown into traumatic, unfamiliar, frightening and painful situations, they’ll be fine.

Several years ago, before my health took a nosedive, my mother had major surgery. As she recovered in the ICU, hooked up to a ventilator and more tubes than I could count, I watched in disbelief as the nurse repeatedly leaned over her bed, adjusted her lines, and even cleaned her without uttering a single word. My mother was awake, aware of her surroundings, unable to move or speak, and completely terrified. It would have taken a few seconds for the nurse to say, “Hello, (Denise’s mom). I’m flushing your lines right now,” but she couldn’t be bothered.

My mom interacted with upward of 50 staff members while she was in the ICU. There were exactly five people — two nurses, two doctors and an amazing Unitarian chaplain who actually came down to the ICU to hold her hand and sing to her — who treated her with kindness. When she became anxious and frightened of her surroundings, the staff responded with impatience, which exacerbated the situation. Despite repeated requests and talks with the patient advocate, a social worker was never brought in. I did my best to help her by myself, and alternated nights at the hospital with another relative so she’d never be left alone.

She’d had major surgery; there was no getting around the physical discomfort. However, there were many steps the hospital staff could have taken — such as speaking to her when they adjusted her lines — to address her anxiety and stress. Most of them didn’t, even when they knew how frightened she was.

That’s often the case for individuals with chronic illness, too. Many of us face sustained stress and fear both inside and outside of exam rooms and don’t have a lot of backup. The support structures we might normally lean on tumble like a house of cards as we lose friends, finances, jobs and homes. We’re forced to give up or greatly reduce activities that make us happy, such as traveling or dance. Things that were once effortless for us become difficult or impossible. Any one of these occurrences would be considered a paradigm-changing major life transition, and we often have several of them thrown at us at once.

I dearly wish adult health care in general were far more compassionate, far more holistic, and far less intimidating. I wish medical schools would spend more time teaching their students to cultivate kind and empathetic bedside manners. I wish hospital administrators and office managers would look around their facilities and make them more patient-friendly and welcoming.

I also wish far more resources and community-based support systems were available for anyone with chronic illness. Searching for help can be a long and arduous process, especially when you’re already dealing with constant exhaustion and pain. What if doctors and hospitals recognized the emotional impact of a chronic illness diagnosis from the get-go, and were able to give each new patient a packet of information on local resources for complementary treatment, counseling, paratransit and supportive programs, instead of just giving us printouts about our medical conditions? What if that information were available in doctors’ waiting rooms, instead of pharmaceutical brochures? What if there were “buddy” programs for us, so we wouldn’t have to go to medical appointments alone? What if there were more support for the numerous illness-specific foundations and organizations out there, and they were able to offer in-person support groups and services in every city? Would it help?

In my case, I think it would. My meltdown wasn’t just about a specific “scary test,” it was borne of pent-up stress and anxiety. In the two months leading up to that afternoon I’d had 28 calendar days of procedures and doctors’ visits, and it had been too much for my normally effective coping techniques.

The modern version of the Hippocratic Oath contains the following lines:

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

We desperately need the health care community to remember this, and to assist in developing resources to help us cope with our new reality.

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