Chronic Illness and Confidence

by Marion Michell

You can listen to an audio-recording of Marion’s essay on Soundcloud.

Lately the phrase you’re just not good enough has plagued me greatly. My art, my writing; my sleep, my rising; my ability to connect, converse, consider; my quests for energy and cure; upswing of any sort – everything seems veined with lack.

Marion Michell, The Limit of my Dreams (2006/7)

M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world. Focus is on basic needs (food, baths, medical appointments, the occasional visitor…) – a handicap for stirring conversations. Self-confidence is always on the wane.

For a while art-making (in the supine) sustained me. As one thing after another fell away, creative endeavours brought pleasure, meaning, purpose, and a wavering self-belief. When capacity and vision waned, I found recourse in writing. Although it hasn’t built the bridges I keep hoping for, it helps me maintain a sense of self that is not overwhelmed by this wretched illness. I wonder though if all I ever do is churn out pretty monologues. I ache to do my bit for M.E. awareness and shine a little.

Our lives can seem obstinately static, to ourselves, but esp. to the outside world. Not much to describe as far as interesting activities are concerned, no fireworks to report (although there is passion), no adventures (not for lack of impulse), rarely achievements which count in the wider world (somehow ambition survives). My modus operandi is patchwork, minutes here, there. This text, surfing the net, conducting (!) a telephone conversation… I bet you know it too: activitus interruptus!

Portrait by Susan Kruse

When silence and solitude shape your days, they lose their gloss! ­Most of my face-to-face interaction is with professionals (carers, befriender, doctors); encounters with friends are precious. Many of us can’t attend weddings, birthday-celebrations, funerals – the rites that bring and hold people together. We follow the changes in our environment with nose pressed against a car window (if we’re able to leave the house). The company of books becomes elusive too (oh, I miss reading), as does keeping up with the news in more than rudimentary ways. It all impacts one’s sense of connectedness and confidence.

The often condescending attitudes towards #pwme, by parts of the medical profession, the media, the benefit system, even those around us, have affected me over the years. Here’s the catch: when I’m at my worst my tired mind latches on the words personal shortcoming. And: I feel shame about craving acknowledgement and affirmation – proof that I exist to others.

How do folk who live with chronic illness, esp. those of us who are mostly or completely housebound, hold on to or bolster a positive form of self-belief? How do we speak confidently from a place of vulnerability and need? I am not partial to 10 splendid ways to help you overcome-fare, or ending on a note of resolution. This stuff is hard! Want to say that much though: I think the great strength we (by which I mean: people with chronic illness) share is resilience. Here’s a building block, if ever there was one.

Marion’s writing can be found at https://supinesublime.wordpress.com
She is on Twitter @marjojo2004 and

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22 thoughts on “Chronic Illness and Confidence


  1. All our lives are equally valid and important, however we choose or have to choose to live them. Wonderful piece of writing highlighting how hard it can be to sustain self belief and feel included in society when sadly most of our lives are spent alone exhausted or feeling isolated at times. Art, writing, family, friends, responsibilities and continual interest in the world are so important. Every day is new and mindfulness can sometimes help to find joy in the smallest thing Xx


    1. Thank you, Tam, for your response and commending my writing. Knowing my words resonate is a boon. Agree with you that curiosity/interest in the world and mindfulness are important. My capacity for joy has actually increased, I think, but all too often it is solitary. Long to share more.


  2. I recognise so much in myself in this but then again I am also a pwme. I have other chronic conditions but nothing that has robs so much of me and from me.
    And I too crave not so much recognition as a spark of outrage from the disabled community.
    I can’t think of any other patient group or condition that has to put up with so much loathing and spite from the medical profession, DWP, NICE and government. Or any other condition that has been used and exploited in the development od disability denial policies developed hand in hand by insurance giants UNUM and successive governments.
    The main oppressor has just been chosen to head up a review of the Mental Health Act and just as a reminder this is the man that described us as the worst of the worst of all patients that deserve no sympathy. A man that has accused us of vile hate and abuse towards ‘researcher’s’ without a shred of legitimate evidence. A man who has literally made his career, money and position in life out of the misery pain and suffering of pwme.
    So I don’t feel guilty for wanting this condition to be recognised and acknowledged with the seriousness it deserves.


    1. Thank you for your comment! There’s so much pwme have to contend with, isn’t there, and the lack of medical research and here in the UK the overriding psychologisation is truly dispiriting. I don’t feel guilty for wanting that to be rectified urgently. Think it’s affected all of us over the years, not just because there is still such limited understanding of M.E. and no treatment, but because of the additional distress, doubts and anxiety these attitudes have imposed on us. Wonder if the film ‘Unrest’ will have a positive effect. Haven’t been able to see it yet…


  3. thank you – this resonates so much with me – and my impairments are much less – but the gremlins of “not enough” and “lack of confidence” are well known by me too.


  4. I smiled at you “10 splendid ways to overcome”. I’m not a fan of these either. Lighting a scented candle or doing some colouring doesn’t always cut it and I want to scream “I have Secondary Progressive MS, people” The skill of getting the help without being hideously patronized is something I am working on, with very little success. My pet peeve is people moving or even touching my wheelchair when Im in it. Anyway, thank you for your blog. It struck several chords -made me think


    1. Thank you for writing, Susan. Glad I made you smile! These umpteen point self-help lists really exasperate me, they seem to proliferate. Pet peeves are stand-ins for a whole plethora of concerns, aren’t they. I think people often don’t look beyond the wheelchair or the label and don’t make much effort to behold the individual. Sometimes want to hold up a sign: I AM HERE!
      And asking for help is terribly hard. I’m still learning. Diplomatic negotiating skills are needed… Have one wonderful carer who gets things, enables, facilitates, supports. Am so grateful for that.


  5. Very nice words and the illustration is beautiful.
    However the best way is to ignore your illness as much as possible.
    It is what it is.
    Guilt and dwelling are a waste of energy and your life.
    Do all that you can and be proud of all of it, no matter how small. Count all the tiny things that are worthwhile.
    Spend as much time as possible giving help to others who are going through bad times. A chronic illness is a wonderful learning curve in dealing with bad times.
    Share what you have with others who are suffering acute hardship.
    We are all just a series of electrical impulses in vehicles that cannot even fly but we can share what we have learned


    1. Thanks, Reg. Life with a chronic illness is certainly a learning curve, although I wouldn’t call it wonderful. Agree with you that it’s important to make the most of our better moments, to try and share and support as much as we can. Feelings of isolation, even shame are not so easily dispelled though; while it may not help to constantly dwell on them I think they need acknowledging – in ourselves and others.


  6. This is common to those of us who have a chronic illness and live alone. Different people have different ways of coping and I, personally, use music. I rarely watch TV, spend most of my time doing research in my study (Cash Not Care was published last year) but, when I need a break, a sense of self-worth and a sense of fun, I play music and often hum along or even sing when energy and breath permit. Don’t ever doubt your own self-worth and your value to others who you help with your writing.


    1. Thanks for writing, Mo! I am so glad music brings you so much joy. Occasionally, when my arms are game, I play supine air-guitar to Lynyrd Skynyrd’s Free Bird! Don’t often get through the whole song, but it’s fun while it lasts. And congratulations on having your study published! Perseverance on top of resilience, that’s something else we all share, I think.


  7. I am not resilient. I was staring at decreptitude long before a car crash precipitated the dreaded degenerative, untreatable collapse of my bones and joints ability to function smoothly. Medication to treat the effects and nothing to be done for the cause have left me in persistant chronic pain and inflammation. My wife has to work full time and my children go to school. Although I’m not alone I feel alone. I watch TV and surf the net. I’ve taken up meditating, plenty of empty alone time to fill. I dream of a homebased, flexitime, online job which generated enough income for a few treats. My benefit went up by a total of 35p a week last April. Maybe it’ll be 36p next year.


    1. I am sorry you have it so hard, Neil, and have no comforting words to offer, just my acknowledgement. Our precarious benefit situations certainly add to the stress of living with chronic illness and pain. It’s not easy to spend so much time on one’s own.
      I am glad though you can surf the internet, maybe liaise, connect occasionally. You say you have no resilience – I wonder if that’s true. You’re here, and I’m pleased you shared. Thank you.


  8. Rings hundreds of bells – though I’m afraid I have no answers. I have a whining voice in my head that is like a churlish school report: could do better.

    But you do shine more than a little, Marion, through your lovely and evocative writing.

    (And ‘activitus interruptus’ is brilliant!)


    1. Made myself chuckle with that phrase, Patricia, which is quite rare. And really didn’t expect life-changing answers. I guess posing questions is me feeling my way towards an acknowledgement of shared complexities. It’s good though to get an insight into what people try. Turns out we’re a resourceful lot!
      From one leaning bell tower to another: thanks so much for commending my writing!


  9. Dear friends,
    Brain & eye fog day chez moi, plus I’m trying to rest up for something tomorrow, but am chuffed to find your comments and look forward to reading and responding when able. Thank you for writing!
    Mxx


  10. Loss of confidence is a major problem – the effects of a combination of profound hearing loss, 29 years of CFS/ME, severe osteoporosis, aging and living alone make for social isolation. The result? Mounting anxiety before any interaction with others. I sometimes find peace meditating and watching the sky or my garden but constantly need to remind myself that I’m doing ok . I’ve begun to explore Buddhism, particularly the works of Pema Chödrön and am finding that helpful – a wonderful antidote to “the devil makes work for idle hands” environment I grew up with. 🙂


  11. I too listen to Pema Chödrön, Lucy! I like the way her teaching is infused with humility and humour. And a housebound friend and I meditate together every afternoon, from our respective beds. Gives my day a bit of structure and (virtual) connection even when all else fails.
    Absolutely sympathise with your social anxieties. For me meeting someone who is not my carer has become so precious that I pore over every moment of the encounter once I start recovering, worried that I’ve said too much, too little, was too forthright, too boring, too this or that. The long gaps between conversations don’t help, nor the idea that I’m likely to assign them more significance than the other person who moves quite freely through the world. I’ve started to think of these over-critical tendencies as kind of self-harming and am trying to let go of them. Best to just enjoy things while they last, I tell myself. Lots to learn…

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