Recommend a book about dealing with disability
May 10, 2017 3:40 AM   Subscribe

I'm looking for a book, preferably written by mental health professional about dealing with the psychological aspects of long-term injury or disability. I'm not looking for something that deals with head trauma/brain injuries – that's what I'm finding a lot of. in particular, how do people that used to be high performers athletically deal with the challenges it brings to their lives in many aspects: from social interaction, mobility, lifestyle changes etc.

There's lots of books on mental toughness and that wasn't an issue when I was performing athletically. The issue comes with dealing with sitting at home not being able to do much anymore. I've had a recent setback again, and the issue is the waiting, And not doing too much again. I don't want to get into it too much. I have multiple injuries and am confident I do what I'm able to do so it's not that mental barrier. If anything, I've been prone to do too much. That's the gist of it.
posted by anonymous to Health & Fitness (6 answers total) 12 users marked this as a favorite
When I was young, I read a novel called Izzy Willy Nilly by Cynthia Voight. It's a young adult book, I guess, but I LOVED it. Izzy is a teen that becomes disabled due to an accident.

One of the things that drew me to the book was that the protagonist's name was Izzy (Elizabeth) and my aunt Elizabeth had also been in an accident, when she was 17: a drunk driver hit her and her boyfriend on a motorcycle. She became paralyzed. She lives a very fulfilling life as a propellor dance teacher, mentor, scholar and (now!) grandmother. <3 So, the book by Cynthia Voight I think helped me to understand the dramatic change from "ability" to "disability".
posted by Dressed to Kill at 5:15 AM on May 10, 2017 [1 favorite]

While not a book, the BBC's Ouch Disability Podcast features interviews from all sorts of people with all sorts of disabilities, and most definitely deals with "social interaction, mobility, lifestyle changes etc."

And not by a mental health professional, but very much on topic: Ryan Knighton's Cockeyed is a collection of personal essays about the experience of going blind as a teenager, and how that started to change things (e.g., becoming a new driver while not fully realizing the extent of his vision loss at that point). His C'mon Papa is about the experience of becoming a father and parenting while blind. Both books are pretty damn funny - he's a great writer.
posted by mandolin conspiracy at 7:32 AM on May 10, 2017 [1 favorite]

There is a subgenre of illness narratology. I really enjoyed Arthur Frank's "The Wounded Storyteller." He examines how people cope with illness and disability by reframing their history/ personal narrative. It is not a how-to, but you might find it helpful. Google "narratology" "illness" "medical anthropology" if psychology isnt getting any hits.
posted by shalom at 10:03 AM on May 10, 2017 [1 favorite]

Journalist John Hockenberry wrote an amusing and insightful memoir Moving Violations: War Zones, Wheelchairs, and Declarations of Independence.

I found reading Rhoda Olkin's What Psychotherapists Should Know About Disability informed me of how therapists without experience might misinterpret my needs.

Peer interaction was crucial for me to understand how not to do too much: I found that online on mailing lists. You can find common cause by searching for your particular impairments +"online support." Those searches may also bring up offline avenues to share experiences.
posted by Jesse the K at 3:07 PM on May 10, 2017

A book I found helpful in the early years of MS was written by Cheri Register. You can find it on Amazon. She has another chronic illness that I don't remember the name of. Her book helped me sort through so many of my thoughts about my value as a person when I had so little, or felt I had so little, to offer my job, my family, life in general. It was written in 1987 but I think holds up well for the topics covered.
posted by cairnoflore at 2:48 AM on May 11, 2017

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