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Life at the intersection of health and mental health: Five lessons behavioral health could learn from cancer treatment

February 25, 2014
  1. Understanding the value of a multi-screen approach

I was at a conference listening to someone from Google talk about healthcare.  One of the things they said really stuck with me: we live in a five or six screen world. I have four screens within a few feet of me here in my living room with a fifth upstairs in my home office.  I’m writing this on my iPad. I sent over a shell document to my iPad using my smartphone's email. I will email the document to my office computer when I am done for final editing. In a few minutes I will use my reader to pick up where I left off on my latest book and later I will enjoy a documentary on my television probably using a program I control through my iPad. Five screens in a few hours. This is the word we live in. That’s why I thought it was so great that the hospital sent me home with a video/DVD from the American Cancer Society. The video allows someone who prefers to receive their information in the video/television format to access what they need. And when I am done with it, I can slip it into the ready to use mailer and return it to the American Cancer Society for the next person to use. Why aren’t we doing that in mental health? Every few weeks I get an email about a new video/movie someone made about mental health that I can rarely see. I would have to fly/drive somewhere to see a movie viewing or buy a DVD at some high price just to see it once and set it aside. There were times in my mental health journey when reading was absolutely not possible for me – when my illness was too intense and I could not focus. But I could take in information, I just needed the information in a format that was more adaptable to my situation – like being able to listen rather than read. Being able to stop, start and replay when I was distracted – like a video. The solution the hospital has come up with – giving a standard video to everyone after surgery and making it reusable – is wonderful. The partnership they have with the advocacy group is something we should be emulating in mental health. (But remember my comment in an earlier blog; if we are not supporting advocacy groups with our donations there is no way any of this can happen.)

2. Free classes, groups and services 

Really? Free yoga classes? Free classes teaching me to meditate?  Free genetic counseling? This is something the breast cancer center at my hospital offers me and the rest of the community.  If the breast cancer people understand the value of yoga in coping with the trauma of living with breast cancer, it just seems like we could understand the value of yoga and meditation in mental health. Why can’t we empower mental health consumers with yoga, meditation and other tools that are offered to breast cancer patients? As a breast cancer patient I could stop by on designated days and get a free chair massage to help me with my stress  How great is that and how wonderful would that be for many of us struggling with depression or anxiety? They also offer a ‘fit club,” a yarn group, art therapy, scrap booking, card making – ways to connect with others, gain support and work my wellness as they pay attention to the “whole person.” Not just my diseased breast.

3. The importance of a smartphone app for the dark moments. 

At the hospital, I was given a business card sized promotion piece loaded with a QR code that I could use to download the free smartphone app “Beyond the shock.”  It has video education (videos are great when tired, dealing with heavy meds and when literacy might be an issue). It has links to a community of others where I see others have posted things like “Is this normal?”  “What do you tell your kids?” and other questions. It has videos of real women who have gone through what I am going through. It’s nice because the other day I had that moment everybody was talking about – that deep fear and despair, that “why me?” moment. And although I have never really thought “Why me?” – because let’s face it, why not me? – I did have that moment of despair. It was in the middle of the night. I could not or would not call my supports. But I could go in and connect online, view some stories and get some hope. And since it’s on my phone I can do that if those moments come when I  am waiting in line, sitting in my doctor’s office or curled up in my comfy chair at home.

4.The value of a symbol to hold onto

As my friends, family and coworkers talk with me about my experiences, they almost always use the word "strong" to describe me. I don’t feel strong. I feel scared, often lonely, sad, and tired. But if I am seen as strong, it might explain why I have gotten lovely cards and flowers (which are so wonderful and so deeply appreciated). One of the amazing things I received was a small handmade pillow for under my arm (because of the lymph node removal) and a small handmade pillow for my breast shaped like a heart. And it has been odd how comforting they have become for me. Yes, they are helpful in dealing with the pain and avoiding the wrong kind of pressure on my wounds but they have also been strange kinds of symbols I hold onto when I am afraid. Someone made those pillows; they sent positive thoughts as they made them. And oddly this is comforting when things are hard. Why don’t we do that in mental health? Why do not we give symbols that can be held, cried on and connected with when things are hard?

5. Connecting with me as a human being

When my nurse navigator left me before I was wheeled into surgery she kissed my brow and told me she would be praying for me tonight and the rest of the week. I was a real person to her, worth her emotional investment. The nurse responsible for my time in the pre-surgical unit showed me pictures of her dog and remembered the name of mine. She too gave me a peck on the forehead before leaving me. She also made a point of talking to my parents as they came to visit me. I was a real person to her. The nurses in my psychiatrist’s office and in the hospitals where I and others I love have been have never remembered my name. They have not been particularly kind (see my “canned nuts” example in an earlier post). My psychiatrists has been known to greet me with a hearty “So, you have been doing well” when I have gone in to see him because I am suicidal and need a med adjustment as a part of my treatment strategy. The reason for my visit is always in my record which he clearly did not read and just as clearly did not remember anything about me when he saw me. (And, yes, I understand he may have been running from crisis to crisis that day, but it’s still pretty discouraging for me to be greeted that way.) To her credit my psychologist/talk therapist has always been fully engaged and has always treated me like a real person. But in general I always get the feeling that I am not quite a real person to the majority of the behavioral health providers I have interacted with for my own personal health. (My professional interactions have been very different and often very respectful.) And I wonder why. Is it the stigma of the illness? Compassion fatigue? Some kind of weird boundary issue wrapped around a professional ethic? All I know is that I have felt like less than a human being when interacting with most behavioral health professionals. Contrast that to the well wishes and kind interaction of the healthcare staff and the systems the hospital and my doctors have set up to help me along the way. How can we bring more humanity into our mental healthcare systems?

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