Everybody possesses innate wisdom about themselves. I don’t know the answer to your question, but I believe that you know the answer to your question. I’m here to provide you with any information you need, support to access resources in the community, or just to be patient and listen. Interview about Peer Support with Keith Scott from Advocates, Inc.
At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy. Afterwards, someone at my table said,
From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.
I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team. Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.
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I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.
I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss. I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Read More
This week two of my readers described experiences of fractured communication with their clinicians. One reader, a person in acute treatment for overwhelming anxiety, found himself watching and feeling the effects of dueling clinicians with widely differing diagnoses, medication regimens, and styles of communication. A collaborative, listening, empathetic physician versus a paternalistic, blameful, arrogant physician. Both physicians practiced in the same organization but in adjacent levels of care (one inpatient and the other outpatient). They didn’t coordinate care – they didn’t even speak to each other. The person with acute anxiety had to muster energy to advocate for himself and seek help from his partner. To little effect. The other reader experienced a sickle-cell crisis in a hospital without a sickle-cell specialist. She couldn’t get pain medication known to work for her. She was classified as a drug seeker. The treating physician wouldn’t communicate with the specialist who had treated this reader successfully many times and managed her long-term care.
So many levels of outrage here. How is it that institutions, practices, and people working in these two programs don’t know about disrespect, poor communication skills and lack of coordination within? Does nobody raise a red flag? Where was the medical record? Where were the leaders? Read More
Several times this week I heard a variation on: I’m so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple things. One person, me, said it about losing weight and soloing. Two things strike me here. First, sucking and second sliding back. Can’t we give ourselves a break and celebrate that we’re trying? I’m trying to meditate every day, lose weight, improve my mental health, solo on my sax!!!! Yippee for me. Yippee for us!!! Recovering, healing, learning, changing habits doesn’t happen in a straight upward line, steadily better. It’s two steps forward, one step back. It’s up and down, first wildly so, then smaller cycles of up and down, over time with forward progress. Looking at just 2 data points only frustrates us, since we tend to recognize the down after the up, rather than the up after the down. In each of the scenarios someone heard the other and provided a good job, way to go, keep it up, keep me posted, call me anytime
I honor you’re work of healing, learning, recovering. Good job, way to go, keep me posted, call me anytime.
A Powerful Union