Patchworktogether Spotlight: Will McNally on living with Chronic Fatigue Syndrome
How long have you had CFS and how long wereyou suffering with symptoms before you were diagnosed?
Was the diagnosis process difficult?
What symptoms do you experience, and how doesCFS make you feel?
CFS can have both physical and mental effectsas a result of each other. I average between 8-12 hours of sleep each day, and no matter how much sleep I get or how good the sleep is, I feel exhausted upon waking up and therefore struggle to get out of bed.
On particularly bad days, I have slept for around 16+ hours. The feeling itself is a constant, plaguing fatigue: at no point within the last five years have I felt anything other than tired. It’s a constant feeling that if I were to crawl back into bed at any point during the day, I could, and would, fall back into sleep.
Mentally, it also creates an ongoing mindset of procrastination: I almost always find myself in the mindset of “I’ll do it tomorrow, I’m too tired now”. This can, in turn, be detrimental to my mental health as I’ll feel lazy and unaccomplished, yet still exhausted as if I’d been busy all day.
Do you feel that you and your condition aretaken seriously, not only by medical professionals, but by university staff andemployers?
Not at all. I have never found a workplace or educational institution that has taken this condition seriously, and it is either perceived as laziness or caused by a lack of: iron, vitamins, exercise, healthy eating, a good sleep pattern…You’re therefore deemed unenthusiastic and a liability.
The fact is there is very little I can do to combat these issues - at my busiest period in university, I was working 12 hours a day, every day, and sleeping 12 hours a day (including a nap in the afternoon). I missed out on lectures I deemed not important enough to have to fight this fatigue and get out of bed for, and at many I did go to, I would find myself falling asleep.
Did the condition affect your ability to work and study during your degree?
This condition impacted my education and higher education immensely. I did not spend £50,000 over three years to willingly sleep through lectures and avoid classes for a subject I chose and loved. I was forced to miss out on many workshops and lectures during my course because I just felt too exhausted to leave the house.
What are your most effective coping mechanisms?
The only mechanism I found that had any impact was a daily structure when I was in a position where I needed to be productive.
For example, I used to work at a restaurant where I couldn’t be late or this could reflect badly on me, leading me to ensure I was awake, ready, and at work on time. However, this was unhealthy in a different way as it never stopped my fatigue, and instead I felt as if I was suffering through each shift, just wanting to go home and rest.
What do you wish people understood about you and your condition?
I wish people understood that this condition is not just tiredness, or laziness. I was a teenager who, at some point, did not have this fatigue, and I remember how it used to feel to be exhausted, but feel well-rested after a good night’s sleep. That does not happen anymore.
This is not something I, or anyone else who suffers from it, wants. Nobody wants to be unproductive; I would love more than anything to willingly work off 6-7 hours of sleep, and wake up at 7am to see a full working day. I do not enjoy spending half my life in bed or sleeping, and I wish people wouldn’t view it as something that could be fixed “if I just…”, because the main issue with Chronic Fatigue is that it is a collection of symptoms related to energy levels, tiredness and fatigue that don’t have a clear origin or solution.
How could a platform like Patchwork Hub improveyour life and job prospects?
There are not many people out there who give this condition the correct support, because of the lack of awareness around it. Having a platform like Patchwork Hub is incredibly useful, as it means you don’t have to explain to employers, tutors, or co-workers that you’re trying really hard, but you just can’t work to the same pace or same time-frames as most others, and need to find a system that fits both parties. Being able to find not only flexible job opportunities, but also a like-minded community, is a gamechanger.
All TagsAcademy for Disabled Journalists Academy for Disabled SEO Specialists Accessibility Accessibility information Accessibility int he workplace Accessibility ramps Accessible education Accessible locations Accessible places Acid reflux Adaptive fashion Advocacy AI All Saints Alt text Assistive technology Autism Awareness Blog Bullying Burnout Business Businesses Cancer Candidates Captions Cerebral palsy Characters Charity Charity sector Chronic pain Closed captions Clothes Clothing Cognitive disabilities Comfort zone Communication Companies Company Company Corner Company culture Confidence Confucius Consultant Consultation Content creator Content designer Data talent Diagnosis Difference Digital transformation Disabilities Disability advocate Disability advocates Disability awareness Disability community Disability confident Disability employment Disability inclusion Disability news Disability Policy Centre Disability Pride Disabled Disabled community Disabled people Disabled People’s Direct Action Network Disabled team Disabled-led Diverse Diversity Diversity and inclusion Diversity Recruitment Platform Domestic violence Dysfluency Education Education and resource platform Employment opportunities Empowerment Ethnic minorities Fashion Fashion industry Fathom Feedback Flexible work Freelance Game Gaming Gareth Walkom Garment technologist Gastrointestinal conditions Gem Turner Gender Grant Logan Guide dog Healthcare Homeworking HR Hybrid working Inclusion Inclusivity India Inspiration Intellectual capabilities Interview process Interviews Invisible disabilities Invisible disability Isaac Harvey Isaac Harvey MBE Istituto Marangoni Jack Wills Job descriptions Job interviews Job opportunities Journalism Journalists Learning disability Leeds Leeds trinity university Legislation LGBTQ+ Limb-pelvic hypoplasia LinkedIn LinkedIn influencer London London Fashion Week Long-term health condition Long-term health conditions Mapping days Matt Pierri Maya angelou Meta Metaverse Migrants Motivation Musculoskeletal conditions National Council for the Training of Journalists NCTJ Neurodivergence Neurodivergent Neurodiversity consultant Neurodiversity space Neurotype Neurotypes New Delhi News Non-profit Novos OBS Office environment Partially sighted People Phase Eight Phone calls Physical disabilities Pirate video games Policy Poverty Presentations Primark Processes and systems Public speaking Puneet Singh Singhal Race Raising awareness Registered blind Remote education Remote work Removing barriers Rights School Scoliosis Scope Selection process Self-employed Self-employment Senior staff Sexuality Shaw trust Shaw trust power 100 list Sign language Social mission Social mobility Social-emotional learning Social-emotional learning platform Software Speaking situation Speech differences Speech disabilities Speech impediment Spotlight series Spotlight stories Ssstart Staff Stammer Stammering Stories Stuttering Sustainable change Sweaty Betty Tech industry Tech talent TEDx Tesco Think tank Underrepresentation Unhidden Unhidden Clothing Universities Vanessa Castañeda Gill Victoria Beckham Video editor Video game Vimeo Violence Virtual reality VR Web accessibility Wheels and Wheelchairs Women Work environment Work from home Working conditions Working from home Workplace adjustments Youth Zoom Abc Ability Today Access to work Accessibility in the workplace Accessibility test Accessible work Acting Adhd Adjustments Administrative Adrian lord Advice Advocacy and campaigns Allparty parliamentary group for inclusive entrepreneurship American civil rights movement Android Anglonorman App Artificial intelligence Bad grammar Barriers to work Bbc Benefits Blind persons act Blue badge Blue badge service specialists Care Career Carer Celtic languages Center on everyday lives of families Ceo Cfs Chloe tear Chronic fatigue syndrome Chronic health condition Chronic illness Commodo aute beatae Community Community story Community, community story, founder, feature, accessible work, disability employment gap, making a difference Companies house Compressed hours Computer science Computers Coronavirus Councils Covid19 Crystal mark standard Deaf Design Dialects Dictionary Digital accessibility Disability Disability discrimination act Disability employment gap Disability rights movement Disability services Disabled peoples direct action network Disabled persons employment act Disabled-led organisation Easy read Edit Tag Test 2 Email address Employers Employment English English speakers Entrepreneur Entrepreneurship Epilepsy Equality Equality act Equality and diversity Equality of access Esources, disability, disability services, support services, community story, features, adjustments, social support network Esse vero eum nisi a Eugenics Facebook Feature Features Fibromyalgia First world war Flexi Flexible working Flexitime Flextime Founder Francesco cirillo Freelancing French Gcses Gdpr General data protection regulation Good Good grammar Google Government policy Government support Graduate Graduates Grammar Grammar schools Health Health condition Health conditions Hearing impairment Help And Support Tags History History of language Holistic Ico Impact Imposter syndrome Inclusive entrepreneur network Inequalities Inequality Information commissioners office Information governance Instagram Internet Jacqueline winstanley Laborum Magna moles Language Latin Law Learning difficulties Lexicographers Limited company Local councils Local government Making a difference Marketing strategy Mecfs Medical conditions Medical model of disability Medical vs social models of disability Medicines Mental health Middle english Mindfulness Mlm Mobility issues Molestias quod sapie Multilevel marketing Nam eaque iure aut v National league of the blind Neurodiversity Nihil corporis aliqu Niya Normans Old english Old french Onboarding and retention Online Out of work Oxbridge Parent Passwords Patchwork hub Payment details Planning Planning for work Podcasts Pomodoro Preposition Private schools Psychiatric Psychiatry Punctuation Qui voluptatem debi React Reasonable adjustments Recruitment Remote working Resources Resources and support Rest Retinopathy of prematurity Sales Scam Search engine Second world war Shell shock Slang Sociability Social Cipher Social interactions Social media Social model of disability Social support network Socialising Spelling Spoken language Spotlight series Spotlight stories Standard english Startup State schools Student Students Studying Suffragette movement Support Support services Syntactician Syntax Tag Technology The Disability Policy Centre The elderly Then barbara met alan Trafalgar square Turkish United nations Universal inclusion University University of arts london University of cambridge University of hertfordshire University of hull University of leeds University of oxford Victoria Jenkins Visual impairment War Ways of working West germanic dialects William shakespeare Windsor consultations WithVR Wordpress Work structure Workforce recruitment Working environment Workplace barriers World war one World war two Young carer