How to keep hope in healing from M.E/CFS and chronic symptoms
“Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.” - Emily Dickinson
When we’re in the depths of chronic symptoms and it’s difficult to see any change or progress from one day to the next, we can drown in what feels like a never ending spiral. When the messages come towards us that we may have to manage symptoms forever or when the lack of change keeps us stuck, it can be hard to keep hope. It can be hard to see any other reality other than the one you’re in.
Yet, I believe hope can always be found, even if it’s deeply buried far within us in a hidden pocket of our soul. Like the words of Emily Dickinson above, it ‘never stops at all.’ Hope keeps our dreams alive, it lights the burning within us, it comes without any explanation or belief other than the very thing it’s destined towards. It only believes in itself. It ‘sings the tune without the words,’ it knows no certainty yet it doesn’t need it because its faith comes from deep within us, from our hearts, with a deep wish and unwavering expectation.
Hope gives you motivation, it gives you a reason to keep going, it allows you to put in the hard inner work and keep moving forwards on your recovery journey. Much like belief in recovery, it’s so important that we find and keep hope alive, however small it may feel, to allow us to hold on tight. Especially, when things feel hard.
If you find it difficult to feel hope or if you’re losing hope, which I totally understand when you’ve been feeling suffering for a long time, borrow it from other people. Drink in their words of hope and inspiration and let them land in your own heart until you can reach into that pocket of your soul yourself. Watch recovery interviews (watch mine here with Raelan Agle and Heal with Liz), reach out to people who have recovered through social media, connect with people who understand. Keep your dreams alive.
How I kept hope during my own recovery
1. I held onto the things I was getting better for
I held onto the love I wasn’t done experiencing from the people around me. The experiences I was yet to have. The joy and wonder I was yet to feel. I wanted that all and I used it as motivation to keep hope.
When we feel despair and hopelessness, your motivation, your why behind your healing inspires you not to give up. What do you want to be well for, outside of simply not having symptoms anymore?
2. If I’d felt improvements and recovered to a point before, why not again?
The knowledge that my body could improve and had recovered from relapses in the past gave me strength and hope. Even when every relapse I had was worse than the previous one, even when I found myself in the most severe relapse I ever had, in a place much worse than ever before, I knew improvement was possible because I had seen it before. And if it can happen once then it can happen again.
Borrow that belief from other people’s improvements, even if you haven’t yet seen them in yourself. Why are you any different from anyone else?
3. My will to survive
I hit rock bottom. And, actually, I hit it many times. I truly felt like I sank to the depths of the ocean. When you’re there, there is only one way up. Even at my lowest ebb, I still clung on. This will to survive I felt gave me hope and desire to find a way to recover. So I never stopped trying.
What have you learnt from your lowest moments? What part of you still wanted to carry on, despite the challenge and pain you were feeling?
4. Seeing other people recover
Like I said, what makes you different from anyone else? Why is your illness special? If other people can recover, why can’t you?
Watch recovery interviews - you can watch two I have done with Raelan Agle and Heal with Liz below. Seek any evidence of people recovering on social media, there is so much of it out there. Listen to podcasts of people’s stories to keep hope and stay inspired (The Power is Within Us, The Chronic Comeback, Like Mind, Like Body are just a few).
5. Engage in the healing community
I didn’t engage in the negative conversation that can surround chronic illness, ME/CFS in particular. It’s not helpful and the narrative that you can’t recover simply isn’t true.
Instead, engage with people who are recovering and have recovered. There is a beautiful community of self-healers on Instagram or Youtube. Listen to the positive messages of inspiration and hope they have to share. There’s nothing like seeing someone out doing things they love to inspire you to want to keep going to do the same.
As well as hope from this community, I received support, love and empathy, and connection when I was completely isolated and bedbound.
Here are just a few amazing people on Instagram who have recovered from chronic symptoms:
@jcamylee
@mytms_journey
@yourgratefulguide
@breatheandhealwithdee
@healwithlizc
@whispersof.m.e
@healandbloom
@heal_and_rise
@healwithalex
@iamsarahharvey
@trustandbloom_ (that’s me!!)
6. Focusing on the good stuff
Consciously focusing on what I still had in my life that brought me joy and gratitude helped keep hope, rather than just focusing on what I was missing out on or lacking.
Our brains have a negativity bias, which means they’re always on the lookout for what’s bad or what could harm us because their ultimate goal is to keep us safe. By knowing of possible danger in our environment, we can prepare ourselves to take action. It makes sense from an evolutionary survival point of view but it doesn’t help us when we want to focus on the good. We have to consciously and intentionally make an effort to do so.
Keeping a gratitude journal or simply writing down each day 3-5 good things that happened that day (however tiny they might be) can keep us focused on a positive outcome. After all, that’s what hope is really all about.
7. A sense of knowing that this wasn’t it
This one’s harder to quantify but deep within me I had a sense, an intuition, a knowing that this wasn’t going to be my life forever.
When you search deep within, when you get quiet and listen to the sound of your breath, your heart beating in your chest, when you search beyond all the fear and doubt and frustration, do you really feel this is it?
8. Visualising myself in the future
Visualisation can be a powerful tool, especially in brain training (a method I used to recover which you can read about in my recovery programme review).
I would visualise myself on a family holiday or on a walk in my favourite place in nature, imagining how it felt to really be there. The aliveness and happiness I felt from simply imagining this, gave me the motivation and hope to keep going towards it.
If it feels too unbelievable to be imagining yourself doing things you love again, imagine yourself doing them way into the future. The space and distance from where we are now can give us more hope for believing it’s possible.
9. Watching videos of things I wanted to do
A bit like watching recovery interviews of people’s stories, watching people do things like wild camping or travelling, let my imagination run. I would feel inspired and imagine myself doing them, and the feeling of so badly wanting to be experiencing these things again pushed my motivation and hope.
Watch videos of things you’re dreaming of, even if you’ve never done them before. Anything you might have ever had an inkling you might enjoy. I had never been wild camping before I got ill but watching videos of other people doing it was really inspiring. Since my recovery, I’ve made this dream a reality.
Wild camping for the first time in the Lake District, UK.
Some hope quotes to inspire
“Keep a little fire burning; however small, however hidden.” — Cormac McCarthy
“Hope is a waking dream.” — Aristotle
“We must accept finite disappointment, but never lose infinite hope.” — Martin Luther King, Jr.
“There was never a night or a problem that could defeat sunrise or hope.” — Bernard Williams
If there was one thing I could do for people on their healing journeys it would be to inspire hope. Hope that healing is possible, hope that you can live your life again. I hope you’ve found that here.
Much love,
Suzi xx
P.s If you’re looking for 1:1 support as you recover, my Health Recovery Coaching might be for you. If you’re looking for ways you can support yourself, check out my journaling guides on my shop. Journaling was a big part of my own recovery.
