Living with Chronic Pain and Illness
Support and inspiration
I’m Kate, a psychotherapist writing about mental health, for you to explore and flourish in a life you love. Upgrade here for tools, resources, meditations and if you’d like to support my work. Thanks for being here!
“Do not go gentle into that good night.
Rage, rage against the dying of the light.” Dylan Thomas
Dear friends,
Illness cloaks itself around the most unsuspecting amongst us. Posting a healing meditation this week got me thinking about our bodies, health, and pain and how we cope with physical challenges. I’m not an expert, so check links below for support from inspiring people who work and live with chronic illness and pain every day.
I have recovered from Long Covid thanks to some pretty radical lifestyle changes. It was another humbling few years in my life. Waves of grief for the body I knew, sorrow and fear peppered with eruptions of burning rage. I welcome her back with so much gratitude - and I worked for it.
‘We cannot direct the wind, but we can adjust the sails.’ Irish Proverb
As a therapist, I often saw clients who made their lives worse without realising, through lack of self awareness, lack of self care, self sabotage or fear. My job was to unravel the roots, extract those knots and free them up so they could get out of their own way.
We Can’t Always Control Our Bodies, But We Can Control How We Live
I hope you’ll find support in the links below, and inspiration from these fabulous warriors living with illness and grace. My contribution is to help you explore the psychological aspects of your illness. Do add your contribution in the comments if you have one.
Processing Self Sabotage
You know what helps you with this and what doesn’t. So what stops you? It could stem from a lack of care in childhood, or low self esteem. Did you let your mood get too low? Perhaps you internalised someone nasty from your past. We can re-wire with some effort to give yourself the best chances. What stops you asking for help? What keeps you stuck in a victim mentality, if that rings a bell?
Tolerating Difficult Feelings
Being with difficult emotions and the moment is how we learn to tolerate those feelings and rebuild.
writes about how pain forces you into the present moment here.Pain does not always have to equal suffering.
Anger is normal, let it bring change, not destruction. Or emotions, even hard ones, These are our humanity. I wish shame wasn’t but it is. Only by feeling our feelings and exploring them, expressing them healthily can we move through them.
Grief for a Lost Future
Permanent health changes or unwanted changes in life direction are tough. If we lose our body function, or friendships and relationships, or our dreamed of future, it is a bereavement. We must grieve. Yes, it really did happen to you. Acceptance can take work.
Self-Care is Free!
I read a comment on a post where the person said they couldn’t afford self care. Self care is free. Fresh air, simple food, mindfulness, journaling, asking for help, challenging comparison, tidy 5 minutes a day, be thrifty, light a candle, pick a flower or leaf from the garden, and creativity every day.
improved her life with daily exercises, writing and meditation. What resistance do you feel to self care?Be Brave With Radical Lifestyle Adjustments
If your life is a new shape, edit it to suit you. I prolonged my recovery from long covid by trying to carry on like before. I realised it was rest my body needed, and it works.
moved into a mobile home by the sea when she became ill, easing financial pressure. Sometimes ill health forces us to live the dream. It can help us see all the beauty we have - if we look for it.Create Moments of Joy
We need smiles, a sense of humour, fun, an appreciation of beauty. Try my meditations for lovely experiences here. Get out in nature - or look out of the window. Listen to birdsong. Watch your favourite shows, read your favourite book again.
Practice Gratitude
Practicing gratitude can help with illness and pain. Despite everything, there is much to love in life. When I was my most ill, I practiced gratitude when I work up. Six things I am grateful for empowered me as I focussed on what I do have, rather than what I don’t.
Monitoring
Consider a Pain or Health Journal
This raises awareness of what trigger or relieves symptoms, so you can make adjustments. Rate your pain or symptoms a rating out of ten daily. Describe it. Note what you ate and drank. What were you doing when your symptoms flared up. Note what you did when it subsided. We may not be able to change it, but we may be able to improve, and build the support structures needed for the worst times.
It helps me when I monitor progress, like that I longer feel fear when I wake up, but ready for the day, and my memory is better.
We must also accept and monitor downturns in our health with all our courage. Sticking our head in the sand stop us getting help and can make things worse.
Tracking your mood may develop awareness around what impacts it, so you can make adjustments.
Relationships with Others
Stop Comparing!
Stop comparing to your old life, to others, to the future you hoped for. If this is what your knobbly life is, then accept what you have. Yes, dream of improvement and remove all the blocks, but dance as you go.
Shame
I address shame in the Heal Your Past Series. Lower your expectations of yourself and others - or you will go into a shame spiral. If we no longer get invited to things, if people don’t enquire how we are, that says everything about them and nothing about you. Reach out. We often have no control over what happens in our bodies and it isn’t something to be ashamed of. It is a lack of support, or perceived lack of support that leads to shame.
Isolation
When met with a lack of understanding or care, we can withdraw. Isolation makes us worse. Connecting brings life and sparkle.
Set Boundaries
Ask for help. Refuse pity. Push back. Call out gaslighting. Create a life for you and your loved ones that works in its own unique way. Don’t fall into co-dependancy. Some thrive on being in ‘helper mode’ which can feel annoying, even if you do need help.
Finding Support
If there’s one thing I’ve learnt on this healing journey is that community is essential. At my illest, the one thing I needed the most was support. It’s the one area I’ve struggled the most with in life due to lack of it.
Gone are the days of figuring everything out on my own. Telling myself that there is no one around to help me or that no one has time for me.
Research local support groups, online, Facebook, or connect with the writers below. Perhaps it can’t change your illness, but having understanding, support and recognition helps face those challenges. When I was unwell with Long Covid I found huge support, relief, and tips in an online Facebook community. You aren’t alone
Resources for you on Substack about illness and pain. You will find inspiration and friends here.
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who writes about life with chronic illness in The Bed Perspective.Also,
writes Inner Workings, including lots of brilliant interviews many who live with chronic illness.- - A Day In the Life Of Someone With A Health Condition
- Shares her experiences of living with chronic illness, for example in this post Permission to Rest
Michelle Spencer writes
- writes
- writes Notes From a Kindred Spirit including this My Body Was Foreign to Me
Will Watson lives with chronic pain and writes the
- has written about her experience living with type 1 diabetes in her post A High Wire Balancing Act
- has written extensively about chronic pain through the context of motherhood and mental health in Motherhood Minute
Find Jane Harrison who writes about living with Multiple Sclerosis at
- wrote about her ‘Pain Marriage’ here.
- writes the Pause about living with Crohn’s Disease.
More inspiring people to connect with:
Others living with chronic illness are:
, , , and who lives with chronic pain, and live with chronic pain too, hopes to write about her experience of endometriosis, though its a tough topic. lives with chronic pain whilst doing awesome things, probably endometriosis too, also here: lives with an IBD making eating a challenge, writes about her life with osteo-arthritis stage 4, has written about her experience of living with an auto-immune disease, writes about her chronic mental health challenges. Theres also , , . lives with an autoimmune disease, and and have written about long covid too, and about chronic fatigue.“God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” Serenity Prayer
Reads: Full Catastrophe Living by Jon Kabat Zinn
Thanks for all your contributions above. I am sorry if I missed you - feel free to share useful links below, books and more, and share this post if you feel someone else could benefit from it.
If you have a chronic illness or low income and little support and would like a paid subscription just ask.
With love and gratitude,
Kate
P.S. Thanks for all your likes, comments, shares and paid subscriptions. It means so much and all helps me do my work.
Do share your experiences, links, tips and recommendations about living with illness or pain. Are you living with an illness, or have you recovered?
This is a beautiful list of resources and signposts Kate. Thanks for taking the time to gather them all in one place, and thanks for the mention here. In my own 15 year journey to putting an autoimmune disease into functional remission, the single biggest support to me was learning to regulate my nervous system and spend more time in the healing ventral vagal branch of the nervous system. We live in a world of dysregulated nervous systems, and this seems to generate so much depletion and inflammation in our bodies. I wish these self-care skills and practices would be taught to everyone in high school.