Living Well with Chronic Illness - Bibliography

Below is the bibliography for my book Living Well with Chronic Illness: Write your own roadmap to healing in tough times.

• '#MEPedia: A Project of #MEAction' (no date) Available at: https://mepedia.org/wiki/Energy_Envelope_Theory (Accessed: 30 March 2024).

• Barry, A. (2019) 'Growing up Irish and Black: "It was the attention my hair provoked – it wasn't good attention"', The Journal, 9 June. Available at: https://www.thejournal.ie/emma-dabiri-dont-touch-my-hair-book-interview-4634220-Jun2019/ (Accessed: 20 September 2023).

• Barker, M. (2019) 'Gender, Sexual, and Relationship Diversity (GSRD)', British Association for Counselling and Psychotherapy. Available at: https://www.bacp.co.uk/media/5877/bacp-gender-sexual-relationship-diversity-gpacp001-april19.pdf (Accessed: 23 January 2024).

• Barton, J.C., et al. (2023) 'Between-Sex Differences in Risk Factors for Cardiovascular Disease among Patients with Myocardial Infarction – A Systematic Review', J Clin Med, 12(15), 5163. doi:10.3390/jcm12155163.

• BBC Sport (no date) 'Tanni Grey-Thompson on attitudes towards pregnant disabled women', BBC News. Available at: https://www.bbc.co.uk/sport/disability-sport/50692077 (Accessed: 9 January 2024).

• Birchall, M., et al. (2023) 'Revisiting Expressive Writing: A Narrative Review of Its Therapeutic Applications', ResearchGate. Available at: https://www.researchgate.net/publication/370341234_Revisiting_Expressive_Writing_A_Narrative_Review_of_Its_Therapeutic_Applications (Accessed: 20 September 2023).

• Burch, V. (2008) Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering. London: Piatkus.

• Butler, P. (2022) 'DWP blocks data for study of whether benefit sanctions linked to suicide', The Guardian, 2 March. Available at: https://www.theguardian.com/society/2022/mar/02/dwp-blocks-data-for-study-of-whether-benefit-sanctions-linked-to-suicide (Accessed: 20 September 2023).

• Cambridge Community Services NHS Trust (no date) 'Children's Occupational Therapy Services: Sensory Strategies – Calming and Alerting'. Available at: https://www.cambscommunityservices.nhs.uk/docs/default-source/leaflets---sensory-strategy-leaflets---April-2015/0216---sensory-strategies---calming-and-alerting---April-2018.pdf (Accessed: 20 September 2023).

• Canto, J.G., et al. (2012) 'Association of age and sex with myocardial infarction symptom presentation and in-hospital mortality', JAMA, 307(8), pp.813–22. doi:10.1001/jama.2012.199.

• Carers UK (no date) 'Key facts and figures about caring', Carers UK. Available at: https://www.carersuk.org/policy-and-research/key-facts-and-figures/ (Accessed: 20 September 2023).

• Cleghorn, E. (2021) Unwell Women: A Journey Through Medicine and Myth in a Man-Made World. London: Weidenfeld & Nicolson.

• Cleveland Clinic (2021) 'The Many Health Benefits of Exercising on a Trampoline', Cleveland Clinic. Available at: https://health.clevelandclinic.org/trampoline-workout-benefits (Accessed: 27 December 2023).

• Cleveland Clinic (2022) 'Parasympathetic Nervous System (PSNS)', Cleveland Clinic. Available at: https://my.clevelandclinic.org/health/body/23266-parasympathetic-nervous-system-psns (Accessed: 20 September 2023).

• Cohen, D. (2023) 'Visibility Medicine'. Available at: https://visibilitymedicine.com/ (Accessed: 21 September 2023).

• Dahlgren, G. and Whitehead, M. (2021) 'The Dahlgren–Whitehead model of health determinants: 30 years on and still chasing rainbows', Public Health, 199(20-24). doi:10.1016/j.puhe.2021.08.009.

• Davis, K.C. (2022) How to Keep House While Drowning. London: Cornerstone Press.

• Diels, K. (2023) 'Kelly Diels'. Available at: https://kellydiels.com/ (Accessed: 21 September 2023).

• Digh, P. (2016) 'No, You Are Not an Hysterical Female, and This Is Not Just Anxiety', Huffpost, 29 January. Available at: https://www.huffpost.com/entry/no-you-are-not-an-hysteri_b_9110982 (Accessed: 21 September 2023).

• Doran, G.T. (1981) 'There's a S.M.A.R.T. way to write management's goals and objectives'. Available at: https://community.mis.temple.edu/mis0855002fall2015/files/2015/10/S.M.A.R.T-Way-Management-Review.pdf (Accessed: 21 September 2023).

• Douzenis, A., et al. (2011) 'The effect of ethnicity on prescribing practice and treatment outcome in inpatients suffering from schizophrenia in Greece', BMC Psychiatry, 11(66). doi:10.1186/1471-244X-11-66.

• Dunlea, M. (2019) BodyDreaming in the Treatment of Developmental Trauma: An Embodied Therapeutic Approach. Oxon: Routledge.

• Dunstan, G. (2021) 'Women with disabilities "groped and not taken seriously"', BBC News, 8 April. Available at: https://www.bbc.co.uk/news/uk-wales-56664969 (Accessed: 20 September 2023).

• Duru, O.K., et al. (2012) 'Allostatic Load Burden and Racial Disparities in Mortality', J Natl Med Assoc, 104(1–2), pp.89–95. doi:10.1016/s0027-9684(15)30120-6.

• Evans, J. (2003) 'The Independent Living Movement in the UK', Independent Living Institute. Available at: https://www.independentliving.org/docs6/evans2003.html (Accessed: 27 December 2023).

• Fassler, J. (2015) 'How Doctors Take Women's Pain Less Seriously', The Atlantic, 15 October. Available at: https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/ (Accessed: 21 September 2023).

• Grover, J. (2017) ChronicBabe 101: How to Craft an Incredible Life Beyond Illness. USA: Orange Grove Media.

• Grue, J. (2015) 'The Problem of the Supercrip: Representation and misrepresentation of disability' in Shakespeare, T. (ed.) Disability Research Today: International Perspectives. Abingdon-on-Thames: Taylor & Francis.

• Harvard Medical School (2020) 'Understanding the stress response', Harvard Health Publishing – Harvard Medical School. Available at: https://www.health.harvard.edu/staying-healthy/understanding-the-stress-response (Accessed: 20 September 2023).

• Harvard T.H. Chan School of Public Health (2018) 'Following five healthy lifestyle habits may increase life expectancy by decade or more', Harvard T.H. Chan. Available at: https://www.hsph.harvard.edu/news/press-releases/five-healthy-lifestyle-habits/ (Accessed: 2 July 2024).

• Hersey, T. (2022) Rest Is Resistance: Free Yourself from Grind Culture and Reclaim Your Life. London: Aster.

• Heumann, J. (2020) Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Boston: Beacon Press.

• Horn, D. (2013) Chronic Resilience. San Francisco: Conari Press.

• Humphreys, K., Blodgett, J.C. and Roberts, L.W. (2015) 'The exclusion of people with psychiatric disorders from medical research', Journal of Psychiatric Research, 70, pp.28–32. doi:10.1016/j.jpsychires.2015.08.005.

• Hurynag, A. (2020) 'Doctors may be missing illnesses because UK medical textbooks often focus on white people', Sky News, 10 July. Available at: https://news.sky.com/story/doctors-may-be-missing-illnesses-because-uk-medical-textbooks-often-focus-on-white-people-12025268 (Accessed: 20 September 2023).

• Jackson, M. (2014) 'Evaluating the Role of Hans Selye in the Modern History of Stress', in Cantor, D. and Ramsden, E. (eds.) Stress, Shock, and Adaption in the Twentieth Century. Rochester (NY): University of Rochester Press. Available at: https://www.ncbi.nlm.nih.gov/books/NBK349158/ (Accessed: 21 September 2023).

• Jung, C.G. (1942) 'Paracelsus as a Spiritual Phenomenon', Collected Works 13. Cited in Dunlea. BodyDreaming in the Treatment of Developmental Trauma (n 3).

• Kafer, A. (2013) Feminist, Queer, Crip. Indiana: Indiana University Press.

• Kaufman, M., Silverberg, C. and Odette, F. (2007) The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain and Illness. San Francisco: Cleis Press.

• L., M. (2024) 'The Energy Metaphor I Find Easier to Explain Than the Spoon Theory', The Mighty. Available at: https://themighty.com/topic/chronic-illness/cell-phone-theory-spoon-theory-energy-chronic-illness/ (Accessed: 11 June 2024).

• Ladau, E. (2022) @emilyladau on Instagram.com post, 6 January. Available at: https://www.instagram.com/p/CYXipVMFi3m/ (Accessed: 21 September 2023).

• Lehrer, R. (2020) Golem Girl: A Memoir. Glasgow: Virago Press.

• Marsh, S. (2021) 'DWP uses excessive surveillance on suspected fraudsters, report finds', The Guardian, 14 February. Available at: https://www.theguardian.com/society/2021/feb/14/dwp-excessive-surveillance-on-suspected-fraudsters-privacy-international (Accessed: 20 September 2023).

• Mason-Bish, H. and Kavanagh, A. (2019) 'Private Places, Public Spaces'. Available at: https://privateplacespublicspacesblog.wordpress.com/ (Accessed: 5 April 2024).

• McClusky, J. (2009) '"Epidemic" of chronic disease?', BMJ, 2009(339). doi:10.1136/bmj.b3753.

• McDonald, H. (2019) '"Innocent people caught up" in UK welfare state surveillance system', The Guardian. Available at: https://www.theguardian.com/politics/2019/aug/07/innocent-people-caught-up-in-uk-welfare-state-surveillance-system (Accessed: 20 September 2023).

• McMaster, V. (2013) 'Why Photo Walks Feel Like Self-Care', Be Your Own Beloved, 21 March. Available at: https://www.viviennemcmasterphotography.com/2013/03/21/photowalks/ (Accessed: 21 September 2023).

• Mercedes, M. (no date) 'No Health, No Care: The Big Fat Loophole in the Hippocratic Oath', Pipe Wrench. Available at: https://pipewrenchmag.com/dismantling-medical-fatphobia/ (Accessed: 2 July 2024).

• Mills, M. (2022) '"We has such trust, we feel such fools": how shocking hospital mistakes led to our daughter's death', The Guardian, 3 September. Available at: https://www.theguardian.com/lifeandstyle/2022/sep/03/13-year-old-daughter-dead-in-five-weeks-hospital-mistakes (Accessed: 20 September 2023).

• Mingus, M. (2023) 'Pods: The Building Blocks of Transformative Justice & Collective Care'. Available at: https://www.soiltjp.org/our-work/resources/pods (Accessed: 09 January 2024).

• Miserandino, C. (2020) 'The Spoon Theory', Lymphoma Action. Available at: https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf (Accessed: 11 June 2024).

• Mundasad, S. (2023) 'Martha's rule: Call for right to second opinion after tragic teen death', BBC News, 4 September. Available at: https://www.bbc.co.uk/news/health-66676770 (Accessed: 20 September 2023).

• National Statistics (2023) 'Family Resources Survey: financial year 2021 to 2022', Department of Work and Pensions. Available at: https://www.gov.uk/government/statistics/family-resources-survey-financial-year-2021-to-2022 (Accessed: 27 December 2023).

• Neff, M.A. (no date) 'Autism, Interoception, and How to Improve Your Awareness', Neurodivergent Insights. Available at: https://neurodivergentinsights.com/blog/autism-interoception (Accessed: 15 June 2024).

• NHS Digital (2022) 'Mental Health Services Monthly Statistics, Performance December 2021, Provisional January 2022'. Available at: https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-services-monthly-statistics/performance-december-2021-provisional-january-2022 (Accessed: 20 September 2023).

• Office for National Statistics (ONS) (2019) 'Disability and crime, UK: 2019'. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/bulletins/disabilityandcrimeuk/2019 (Accessed: 20 September 2023).

• O'Rourke, M. (2022) The Invisible Kingdom. New York City: Riverhead Books.

• Panzarino, C. (1994) The Me in the Mirror. New York City: Seal Press.

• Park, C. (2023) @MeanderingPark on Twitter.com (x.com), 2 July. Available at: https://twitter.com/MeanderingPark/status/1675417730164592646 (Accessed: 20 September 2023).

• Peepas, J. (2012) 'Question #174: Dating secrets of THE TERRIFYINGLY AMAZING', Captain Awkward. Available at: https://captainawkward.com/2012/01/16/question-174-dating-secrets-of-the-terrifyingly-amazing/ (Accessed: 21 September 2023).

• Piepzna-Samarasinha, L.L. (2018) Care Work: Dreaming Disability Justice. Vancouver: Arsenal Pulp Press.

• Piepzna-Samarasinha, L.L. (2022) The Future is Disabled: Prophecies, Love Notes, and Mourning Songs. Vancouver: Arsenal Pulp Press.

• Pistoia, F., et al. (2015) 'Contribution of Interoceptive Information to Emotional Processing: Evidence from Individuals with Spinal Cord Injury', Journal of Neurotrauma, 32(24), pp.1981–6. doi:10.1089/neu.2015.3897.

• Powell, R.A., et al. (2022) 'Tackling racism in UK health research', BMJ, 2022(376). doi:10.1136/bmj-2021-065574.

• Privacy International (2021) 'Shedding light on the DWP Part 1 – We read the UK welfare agency's 995-page guide on conducting surveillance and here are the scariest bits', Privacy International. Available at: https://privacyinternational.org/long-read/4395/shedding-light-dwp-part-1-we-read-uk-welfare-agencys-995-page-guide-conducting (Accessed: 20 September 2023).

• Pring, J. (2023) 'Call for urgent inquiry into "covert surveillance" in benefit assessments', Disability News Service, 20 April. Available at: https://www.disabilitynewsservice.com/call-for-urgent-inquiry-into-covert-surveillance-in-benefit-assessments/ (Accessed: 20 September 2023).

• Radmacher, M.A. (2009) Courage Doesn't Always Roar. San Francisco: Conari Press.

• Raimondi, G. (no date) 'Nervous System Soothing', www.gwynnraimondi.com. Available at: https://gwynnraimondi.com/sootheyournervous system/ (Accessed: 20 September 2023).

• Randall, C. (2021) 'Eco Ableism and the Climate Movement', Friends of the Earth Scotland, 29 July. Available at: https://foe.scot/eco-ableism-and-the-climate-movement/ (Accessed: 24 September 2023).

• Rasmussen, C. (2019) Second Firsts. Carlsbad: Hay House.

• Reaver, U. (2020) 'Unified Cutlery Theory', Demcast USA. Available at: https://demcastusa.com/2020/03/01/unified-cutlery-theory/ (Accessed: 11 June 2024).

• Reeve, D. (2015) 'Psycho-emotional disablism in the lives of people experiencing mental distress', in Spandler, H., et al. (eds.) Madness, Distress and the Politics of Disablement. Bristol: Policy Press.

• Remen, R.N. (2006) Kitchen Table Wisdom: Stories That Heal. 10th Anniversary ed. New York: The Berkley Publishing Group.

• Rethink Mental Illness (2022) 'Rethink Mental Illness calls for immediate end to benefits sanctions for disabled people as "cruel" penalties soar', Rethink Mental Illness, 16 October. Available at: https://www.rethink.org/news-and-stories/news/2022/08/charity-raises-alarm-over-damaging-mental-health-impact-of-benefits-sanctions-with-dwp-penalties-soaring-as-cost-of-living-crisis-bites/ (Accessed: 20 September 2023).

• Rothschild, B. (2003) The Body Remembers: The Psychophysiology of Trauma and Trauma Treatment. New York City: W. W. Norton & Company.

• Salisbury, H. (2019) 'Helen Salisbury: The 10 minute appointment', BMJ, 2019(365). doi:10.1136/bmj.l2389.

• Scandola, M., et al. (2020) 'Visuo-motor and interoceptive influences on peripersonal space representation following spinal cord injury', Sci Rep, 10:5162. doi:10.1038/s41598-020-62080-1.

• Schaan, V.K., et al. (2019) 'Childhood Trauma Affects Stress-Related Interoceptive Accuracy', Front Psychiatry, 10:750. doi:10.3389/fpsyt.2019.00750.

• Schalk, S. (2016) 'Reevaluating the Supercrip', Journal of Literary & Cultural Disability Studies, 10(1), pp.71–86. doi:10.3828/jlcds.2016.5.

• Schalk, S. (2022) Black Disability Politics. Durham: Duke University Press Books.

• Scope (no date) 'Disability facts and figures', Scope. Available at: https://www.scope.org.uk/media/disability-facts-figures/ (Accessed: 20 September 2023).

• Seex, J. (no date) 'John Seex: Psychotherapy and Supervision'. Available at: https://www.onbeinghuman.co.uk (Accessed: 17 June 2024).

• Sense (no date) 'The social model of disability', Sense. Available at: https://www.sense.org.uk/about-us/the-social-model-of-disability/ (Accessed: 20 September 2023).

• Shakespeare, T. and Watson, N. (2001) 'The social model of disability: An outdated ideology?', in Barnartt, S.N. and Altman, B.M. (eds.) Exploring Theories and Expanding Methodologies: Where we are and where we need to go: Volume 2. Leeds: Emerald Group Publishing Limited.

• Shapiro, J. P. (1994) No Pity: People with Disabilities Forging a New Civil Rights Movement. New York City: Crown Publishing Group.

• Shukla, N. (ed.) (2016) The Good Immigrant. London: Unbound.

• Snow, R., Humphrey, C. and Sandall, J. (2013) 'What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study', BMJ Open, 3(11). doi:10.1136/bmjopen-2013-003583.

• Sohal, M., et al. (2022) 'Efficacy of journaling in the management of mental illness: a systematic review and meta-analysis', Family Medicine and Community Health, 10(1). doi:10.1136/fmch-2021-001154.

• Sontag, S. (1978) 'Illness as Metaphor', The New York Review, 26 January. Available at: https://www.nybooks.com/articles/1978/01/26/illness-as-metaphor/ (Accessed: 21 September 2023).

• Strayed, C. (2011) 'Dear Sugar, The Rumpus Advice Column #71: The Ghost Ship That Didn't Carry Us', The Rumpus, 21 April. Available at: https://therumpus.net/2011/04/21/dear-sugar-the-rumpus-advice-column-71-the-ghost-ship-that-didnt-carry-us/ (Accessed: 21 September 2023).

• Sunglim-Burns, X. (no date) 'Heroine Training', heroinetraining.com. Available at: https://www.heroinetraining.com (Accessed: 14 June 2024).

• Tanhane, A. (no date) 'The Second Arrow', Miyanda Therapy and Training. Available at: https://mindfulnessmeditation.net.au/arrow/ (Accessed: 21 September 2023).

• Velarde, M.D., Fry, G. and Tveit, M. (2007) 'Health effects of viewing landscapes – Landscape types in environmental psychology', Urban Forestry & Urban Greening, 6(4), pp.199–212. doi:10.1016/j.ufug.2007.07.001.

• Von Bargen, S. (2018) 'How to Turn a Bad Day Around (Even if it's 8 pm)', Yes & Yes. Available at: https://www.yesandyes.org/2018/02/how-to-turn-a-bad-day-around.html (Accessed: 20 September 2023).

• Westervelt, A. (2015) 'The medical research gender gap: how excluding women from clinical trials is hurting our health', The Guardian, 30 April. Available at: https://www.theguardian.com/lifeandstyle/2015/apr/30/fda-clinical-trials-gender-gap-epa-nih-institute-of-medicine-cardiovascular-disease (Accessed: 20 September 2023).

• Wier, K. (2023) 'What is interoception, and how does it affect mental health? 5 questions for April Smith', Monitor on Psychology, 54(3), p.33. Available at: https://www.apa.org/monitor/2023/04/sensations-eating-disorders-suicidal-behavior (Accessed: 15 June 2024).

• Wong, A. (2022) Year of the Tiger: An Activist's Life. New York: Vintage Books.

• Wong, A. (2023) 'What I've learned being reliant on a caregiver', CNN Opinion. Available at: https://edition.cnn.com/2023/02/22/opinions/caregiver-advocacy-legislation-wong-ctrp/index.html (Accessed: 27 December 2023).

• Young, S. (2014) 'I'm not your inspiration, thank you very much', TEDx Sydney. Available at: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much (Accessed: 27 December 2023).