Patient stories on recovery

15 books to devour for insight, understanding and much needed hope.

Part 4 of a series on recovery. So far we have covered

• why we need to open the door on recovery and what it even means

• what made its contribution to my own (its never what has been assumed)

• assumptions and judgements made by others pre and post health improvements

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When I first began to share my story, I wondered why I couldn’t find any written by anyone else. Surely I am not the first person to heal themselves to this extent? Why is noone out there sharing their stories so that we can all learn from them?

Then, in writing my own I realised how damn traumatising getting the story out of your body is. Add to that, putting your written word out there for all to see, judge and attack.

Photo by Milad Fakurian on Unsplash

I’ve described writing as an evolutionary process of my being from the off.

I used to shake, feel sick to my stomach and have experienced vulnerability hangovers. I’ve lived in fear of repercussion for years.

I see the press and media (try to) discredit those of us who dare to be different, those of us who share our story, those of us who try to empower others in what has grown to be a disempowering world.

It’s been triggering to come across patient stories that have taken me years to come across. Why - when they are recommended a “must read” - haven’t they been made more easily available and accessible to come across? What difference would it have made to my life and my health if we had learned from them sooner?

I believe so strongly that it is in the sharing of our stories that will lead to the greatest change. Change within our community and the world that we so desperately need to see. No matter how far into the future this may be, it is better than our lived reality; disability by illness is increasing and is only expected to continue increasing.

Photo by Drew Beamer on Unsplash

As part of my research for writing my own memoir, I’ve uncovered so many great stories of writers who have found the courage and endurance to share what they have. All to inspire others, make them feel less alone and share with them what they wished they’d had. For the very benefit of our future selves.

Reading patient stories can teach us so much, piece together so many missing insights. Whilst all journeys are individual and unique, our suffering isn’t. There is much to be gleaned from the agony and the endurance to the wisdom and lived experience of the writer. We can learn so much from reading one another’s stories. Finding hope and resilience in the darkest of days, the strength and a reason to carry on to name but a few.

Sharing these in the order that I read them. I am old school and my greatest love always was reading so I read the paperback and I’m lucky it brings great joy to my inner child and that I had that capacity to read. Many are on kindle, some are available on audio:

Migraine specific

10: A memoir of Migraine Survival - Daniella Newport Fancher

Uncovering Bliss: A Journey with a Vestibular Condition - Em Englert

My Migraine Breakthrough: How I Journeyed out of the Darkness of My Migraines to the Light of a Reclaimed Life - Lee Canter

Unleashing My Inner Power: Daring to Dream & Flying Fearless - Amber Horrox (my own e-book)

Have you ordered your copy?

All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache - Paula Kamen¹

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Non-migraine specific

Sink or Swim: A Memoir of Triumph Over Adversity - Anne Givens

Finding Peace with a Devastating Disease: Reflections on Endometriosis - Amy Corfeli

My Stroke of Insight: A Brain Scientist’s Personal Journey - Jill Bolte-Taylor

Recovery From My Bed: Finding Strength & Resilience in Illness -

Roi Shternin

All Good Things: A Memoir About Genetic Testing, Infertility and One Woman's Relentless Search for Happiness - Jan Paterson²

I Haven’t Been Entirely Honest with You - Miranda Hart (yet to read)³

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Poetry

Tapestry of Life: A Reason for Every Season - Lorraine Buxton

Burns Unit: Poetry to Heal the Wounds of Medical Gaslighting - Jess Gregory

Life of Mine: A Lifetime Journey Through Chronic Illness - Daniela Vasconcellos⁴

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Non-chronic illness related

Expecting Adam: A True Story of Birth, Rebirth and Everyday Magic - Martha Beck

Left to Tell: Discovering God Amidst the Rwandan Holocaust - Immaculee Ilibagiza

Long Walk to Freedom - Nelson Mandela (yet to read)

Photo by Eneko Uruñuela on Unsplash

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An invitation to reflect with me

Which of these books have you read or listened to/heard of?

Which ones do you feel most drawn to/inspired to read?

What part do you feel learning about the story of others plays in the journey of recovery?

Where abouts are you along the path of sharing your own story?

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Want to get started on your journey of doing the same?

Every Monday morning (GMT) we meet in circle to carry out some gentle Healing Through Writing. (Wednesday lunchtimes are coming soon.) Read all about it here:

A Sacred Space for Writers

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Catch up on the series so far

Part 1: Opening the door on recovery.

Part 2: A Fork in the Road - The path to recovery, is there one?

Part 3: What people said to me.

1. Paula Kamen is yet to be scheduled in sharing her story on Your Migraine Story Matters, however has agreed to guest for us which I am super excited about! Let me know if you’ve read the book she wrote over 2 decades ago and have any questions to ask.

2. Jan Paterson was our 3rd guest on newly launched podcast, Your Migraine Story Matters. Sharing with us why she’s written her new book, Positively Rare and how she has learned to blend happiness with Migraine (and infertility and Huntington’s Disease). A must listen.

3. I’ve been unsure whether to order this one but have decided I will read it as part of research. It’s been fascinating to read differing reviews of this one, making me appreciate how triggering it can be for readers when sharing our story. I mentioned in part 1 the media bashing this book has been given. I love how

Eva Lydon

shares her appreciation of the balance of humour, education and seriousness of misdiagnosed illness in a light-hearted manner. “Let Miranda take you on a whimsical journey of discovery and guide you through the ten keys to living and feeling well”.

4. Daniela is scheduled to appear as a guest on Your Migraine Story Matters, I can’t wait for her to read one of her poems to you. She is also Substack author of

Through The Looking Glass

if you’d love to connect with her extraordinary journey of life lived navigating multiple chronic illness including migraine and recent diagnosis of AS.