Opening the door
On recovery
During 2024, I learned that in the same way the complexities of chronic illness were dismissed and misunderstood, so too was recovery. Not just within the medical field but within the chronic illness community too.
It was upon seeing a post with thousands of likes and many hundreds slating those of us in recovery that I witnessed this to such an extent for the first time.
Comments were shared like
“It can’t have been that bad.”
“They couldn’t have been that ill.”
To me, it feels like we are adding to the separation, divide and othering that already exists and is what many of us are actively trying to move away from. All of which is contributing to how we are left feeling. Meanwhile, disability by illness is increasing. With an expectation that it is going to continue increasing1.
For the first time last summer, I saw mirrored back to me all those years (decades) of dismissal and gaslighting I did to MYSELF!
As a result of witnessing this in myself as well as others in community, I can now see this in conversation I have with others. How much we gaslight ourselves that everything is better than it is. How much we dismiss our own pain, suffering and symptoms. How much we tell ourselves so and so has it worse (or better) and/or any range of other narratives we have hammering away in our heads.
This has all got me thinking. What is recovery? What does it even mean?
The Oxford dictionary terms it
1. a return to a normal state of health, mind or strength.
the action or process of regaining possession or control of something stolen or lost."
This definition highlights to me why - even though I regularly use this term because I don’t yet have another - I don’t really identify or gel with it.
“A normal state of health” - what is normal?
“Regaining possession or control of something” - letting go of control was one of the many breakthroughs I’ve experienced in my healing. It plays it’s part in why I am as well as I am now.
My personal motto over the past near 7 years and is now a message that permeates my writing is:
“creation not control”
To consider recovery from the perspective of one day sick and the next day well is black and white in its thinking and singular in its approach.
It doesn’t take into context the level of complexity we are dealing with here. Leaving the only logical assumption (medical or otherwise) to not believe in its possibility.
Many of us are learning the hard way that logic - no matter how much willpower you throw at it - is not what is going to get us well.
To me that does not and never has done, mean that there isn’t another way.
In searching for the Oxford definition of recovery, I came across SAMHSA’s definition of ‘the true meaning of recovery’:
A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.
Here I love that recovery is described as a “process of change”. Not a one way or the other. Not a magic bullet. No overnight suggestion, quick fix or cure is even mentioned. And yet, the possibility of change is.
When it comes to my own recovery, I fully immersed myself in the process of change from the moment I woke up to complete disability by illness in 2018.
This approach led to improving my health and wellness beyond what was medically believed possible.
I pursued an entirely body led approach and discovered along the way that even though we are mostly living in survival mode that it is possible to thrive.
And we don’t need to pay the earth for it.
In fact, I’ve become more environmentally conscious, live a much simpler life and spend less than I did in the before times as a result.
Instead of all we’re doing costing the earth, why don’t we find a new way of being that won’t cost us the future of our humanity? As well as what we can quite clearly see now; our health.
Towards the end of last year I read one of
’s books, Recovery From My Bed2. I LOVE that he determines his epic journey of recovery from POTS as “fully rehabilitated”. Something he pretty much had to learn to do for himself after nearly ten years completely bedbound in his 20’s. He also had to undertake what was, in his case, the mammoth task of diagnosing himself before he could get anyone to validate his symptoms.Incidentally, Roi’s version of full rehabilitation is that he is no longer bedbound the entire month. He is symptomatic most days and continues to live with POTS. He remains fully open to finding new ways to support his health - holding high regard for the possibility of continued improvement.
To add to this, Roi is on a big massive mega mission to create a process of change in the relationship we have between the patient and the medical care system.
As part of my book writing research, I’ve become enthralled in the recovery journeys of others who live with complex and debilitating illness. Prior to completing a book proposal for global publishers, Hay House (where I had to submit a selection of reviews on similar books in the genre I am writing about), I had NO IDEA there were so many patient stories out there. Nor that recovery meant so many different things to different people.
For the author of 10: A Memoir of Migraine Survival, Daniela Newport Fancher, writes that she still lives with Daily Persistent Headache. However, she no longer wants to end her life because of it. She lives with it and has a desire to continue living. Perhaps you can only appreciate the significance of this recovery if you have been there yourself and are needing some encouragement that it is worth living another day. That there can be hope on the other side. With or without physical change.
As with many of our stories, this memoir of migraine survival doesn’t come with the fairy tale ending that a variety of publishing agents have deemed necessary, leaving her with no other option than to self-publish.
Does that mean a person’s own version of success and recovery is less than? It would appear that we live in a world and society determined to deem it so, but does that mean in our own personal cases that we must continue with the narrative put upon us?
We don’t have to continue with anyone else’s version of success. Recovery does not have to mean to us what it means to someone else. When it comes to the narrative on chronic migraine and complex illness, for the love of god,
let us rewrite our own!
It’s for this and all the above reasons why I’ve had a whole series written on recovery for a little while. This section has become a new addition to that! And as you can see, I’ve got carried away in writing.
Thank you for being here.
My intention is to open the door on the discussion and keep the following posts pretty short.
If Miranda Hart’s speaking out about her recovery from ME has taught us anything, its that this topic can be as activating to the nervous system as it is in gifting us (much needed) insight and hope. Particularly when it comes to recovery and living well with joy - comparable with how the sharing of such a story is received by the press3.
Each Sunday evening for the next few weeks I will share the next part of this series with possibly an additional blog post between4.
To end the opening of this discussion, I’d like to invite you to sit in reflection with the following prompts. As much as I’d love to hear from you in the comments (please do share), in the first instance I encourage you to journal on your answers to the following questions:
In your own words, what is recovery?
What does it mean to you?
What does it look like?
How does it/would it feel?
Does recovery look different to you now vs how it did in the past? Might it look different again in the future?
Where does recovery start?5
How does recovery end?
What does the journey of recovery look like? In a graph, in your day to day/week to week/month to month, or even moment to moment?
Psst
At the last minute I am throwing this into the 12 Chapters Club which is a free challenge hosted by
over on . There are 330 of us in there! Are you on of them?? If so, how’s it going?My future intention is to share the healing acronym I have created based on the word HEADACHE. I also want to start writing about the different pillars of health and what I have come to understand they mean.
The one thing I realised when I was slung into this shit show of chronic and disabling illness was that (collectively) we do not understand the picture of true health. What health looks like, feels like and is made up of. I intend to shine a different light on the way we look at health with my 3rd book (which has peaked the interest of global publishers, Hay House), Making Peace With Migraine.
Therefore, what I am scheduling each month will not be the full chapters but very insightful snippets covering different aspects that I intend to include in this book.
I saw this cited in the Global Burden Disease Report for migraine. Pre-pandemic.
I will be dedicating one part of this series to all the books I have read on recovery. Turns out there’s loads and there is so much we can learn from them.
Miranda’s approach to taking responsibility for her health and sharing her insight and understanding of what it has taken for her to recover has been branded as “pseudoscience” and “dangerously outdated” by The Daily Mail. What a way to silence patient voices and keep it difficult for people to speak out.
Each January and February, I put no pressure on myself to show up weekly. Gifting myself a little bit of a break and easing any pressure on my work during the season of hibernation and winter. This sets me up for a flurry of energy and activity for Spring and Summer and ensures that my health continues to improve - as slowly and steadily as that may be.
One of our future podcasts, Your Migraine Story Matters with Kerry Spalding shares exactly when she feels her recovery journey started. It was enlightening to find that for her, it began with voicing what she had been hiding for many years (decades). I hadn’t looked at it this way before.
Love this ❤️ thank you for sharing. So many insights and little nuggets that have got the cogs in my brain whirring. I also feel so validated! Definitely going to sit with those prompts next time I journal x
I love this post so much, Amber. Lately I’ve begun thinking of recovery as “am I any bit better than I was?” While I believe I can fully recover and have a great deal of hope around it, I also know that if I don’t, life will still be good. Just like the migraine author you cited.