A new student society has been set up in the university where I work. It’s called The Health Care Society and the whole point is to put the patient and the patient’s voice at the center of health care. This is something I’m very passionate about. So I’ve put together a list of the best books and movies that I’ve seen and read so far that give insight into what it’s like to be the person experiencing the illness or condition. No-one knows it like the person living it.

So let’s start with the books. These are all excellent reads and will move you both to laughter and to tears. I’ve read them all and ruined my mascara repeatedly! I’ve divided them into 4 different categories.

#1 First person accounts

1. The Diving Bell and the Butterfly by Jean Domnique Bauby
2. Thinking in Pictures by Temple Grandin
3. My Stroke of Insight by Jill Bolte Taylor
4. Expecting Adam by Martha Beck
5. I Think There’s Something Wrong With Me by
6. The Wounded Story Teller by Arthur Frank
7. Anatomy of an Illness as Perceived by the Patient by Norman Cousins
8. Meaning of a Disability: The Lived Experience of Paralysis by Albert Robillard
9. Staring at Lakes by Michael Harding
10. Hanging with the Elephant by Michael Harding
11. Ten Thousand Joys & Ten Thousand Sorrows: A couple’s journey through Alzheimer’s by Olivia Ames Hoblitzelle
12. When Breath Becomes Air by Paul Kalinithi
13. My Left Foot by Christy Brown
14. Like Sound Through Water: A Mother’s Journey Through Auditory Processing Disorder by Karen J. Foli
15. The Impossible Just Takes a Little Bit Longer by Art Berg
16. If You Could Hear What I See by Kathy Buckley
17. Look Me in the Eye by John Elder Robison
18. The Year of Magical Thinking by Joan Didion
19. Paula by Isabelle Allende
20. The Horse Boy: A Father’s Miraculous Journey to Heal His Son by Rupert Isaacson
21. We Need To Talk About Grief: How to Be a Friend to the One Who’s Left Behind by Annir Broadbent

Your suggestions

# 1 Tuesdays with Morrie by Mitch Albom

#2 The Reason I Jump by Naoki Higashida

#3 My Donkey Body: Living With a Body That No Longer Obeys You by Michael Wenham

# 4 Against the Odds: Living with Motor Neurone Disease by Andy McGovern

#5 Ghost Boy by Martin Pistorius

 

#2 Books about conditions

1. The Autistic Brain by Temple Grandin
2. Uniquely Human: A Different Way of Seeing Autism by Barry Prizant
3. The Man Who Mistook His Wife for a Hat by Oliver Sacks.
4. Hallucinations by Oliver Sacks
5. Migraine by Oliver Sacks
6. An Anthropologist on Mars by Oliver Sacks
7. Seeing Voices : A Journey into the World of the Deaf by Oliver Sacks
8. When the Brain Can’t Hear by Terri James Bellis
9. The Brain That Changes Itself by Norman Doige

 #3 Fiction

1. The Rosie Project by Graeme Simsion
2. The Rosie Effect by Graeme Simsion
3. House Rules by Jodi Picoult
4. The Curious Incident of the Dog in the Night Time by Mark Haddon
5. Still Alice by Lisa Genovi
6. Me Before You by JoJo Moyes
7. My Sister’s Keeper by Jodi Picoult
8. Great Small Things by Jodi Picoult
9. She’s Come Undone by Wally Lamb
10. I Know This Much is True by Wally Lamb
11. We Need To Talk About Kevin by Lionel Shriver

 #4 Medical Memoirs

1. Do No Harm: Stories of Life, Death, and Brain Surgery by Henry Marsh
2. On the Move by Oliver Sacks

Your Suggestions

# 1 In My Room by Jim Lucey

And here are the movies some of which are made from the books- I always prefer the book first!

Movies

1. The Diving Bell and the Butterfly
2. Inside I’m Dancing
3. My Left Foot
4. Untouchable
5. Me Before You
6. Brene Brown Empathy vs Sympathy https://www.youtube.com/watch?v=1Evwgu369Jw

Your Suggestions

#1 Patch Adams

#2 El Mar Adentro/ The Sea Inside

I’d love to hear about what other books you’ve read or movies you’ve watched that put the person’s experience at the center, rather than focusing on labels or deficits. Be sure and leave a comment below telling their names.

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Let’s get talking!

MP