Personal Stories

‘But You Don’t Look Sick’: Living With An Invisible Disability

Invisible Illness

    By Nicole Precel in The Sydney Morning Herald.   When Rebecca Young parks her car in a disabled parking spot she often feels the searing stares. Is she driving her grandparents’ car? Why does she have a disability sticker when she is aged in her 30s and appears to walk perfectly well? Ms […]

Parents And Children Missing From Their Lives Due To M.E.

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  From #MEAction.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is […]

Legal Firm Hands Out Cameras To Help Disabled Passengers Prove Discrimination

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  By John Pring in Disability News Service.   Disabled people who experience repeated discrimination on public transport are being offered a camera to record video evidence for possible legal cases. Legal firm Fry Law, which specialises in disability discrimination cases, is hoping some of the evidence produced can then be used to bring cases […]

Architect Anthony Clarke’s Designs For ME

Me Australia

  by Anthony Clarke in ME News Australia.    Anthony Clarke of BLOXAS, an architecture practice for empathic and experimental architecture, was contacted by a South Australian woman with ME to design a home for her. His research led him to a screening of ‘Unrest’ and a friendship with Anna Kerr, who also has ME. […]

My Story

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    From Mummying and M.E.   I used to be healthy (ish!) Full of energy. I used to think nothing of working a 10+ hour day, 5 days a week, going to a 2-hour rehearsal twice a week after work, and most other nights going for a drink or 2 at the local. Weekends were spent […]

Why Friendships Can Be Difficult With A Chronic Illness

Friend

    By Jo Moss in The Mighty.   There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

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  From the Not Just Tired Blog.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is […]

Disability Hate Crime: Number Of Reports Rising

Disability Parking

From BBC News. Shocking but not surprising is how one campaigner has described a rise in disability hate crimes. Research by learning disability charity United Response found there were more than 6,000 reported cases in 2018-19, a rise of just under 12% in a year. The police force area with the largest number was West […]

Unsolicited Health Advice Is Intrusive & Invalidating – Please Stop

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    By Jo Moss in A Journey Through The Fog.   Everyone living with a chronic illness has had to deal with unsolicited advice about their health. Whether it’s from strangers on social media or from well-meaning friends and family, uninvited advice is a frustrating part of living with an incurable chronic illness. It’s […]

Interview With Dr Nina Muirhead

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    From ME Support In Glamorgan.   Dr Nina Muirhead is a dermatologic surgeon at the NHS who is married and has two children. Anyone hearing this information may think that everything is going well with her. In fact, she has been suffering from a disease called Myalgic Encephalomyelitis (ME), commonly known as Chronic […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

David Tuller

    By Cort Johnson in Health Rising.   “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]

Teen Housebound By ME Threatened Wiith Fine By School For Being ‘Truant’ – Now Benefits Assessor Says She’s Not In Enough Pain

Children

  By Claudia Tanner in iNews. Georgia Whyard claims teachers said she had ‘school phobia’ despite having an official diagnosis of myalgic encephalomyelitis In brief The once A* pupil suffers pain, extreme exhaustion, and migraines Mother says she was branded ‘school phobic’ due to poor attendance Department for Work and Pensions ruled she is not […]

Living With An Unsociable Illness

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  From the Not Just Tired Blog. As I’m writing this post, I’m sat in bed, having to take time out to rest, whilst we have a family member staying with us for the weekend. Enjoying listening from afar to the lively chatter, yet not a part of it. Would I not rather be downstairs, chatting […]

The Power Of Listening

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    From A Life Hidden. In September 2016, I contributed to a training course for junior doctors at my local hospital.  The following was used as part of a seminar entitled “Patients and doctors as partners in learning”.  I used the term ME/CFS for this piece, as this is how ME is known within the NHS. […]

Socialising As A Disabled Person Can Mean Forking Out £70 For Brunch

Samantha Renke

    By Samantha Renke in the Metro.   If you think we live in an equal society, ask yourself this: have you ever payed £70 to eat brunch? This is exactly what happened to me just the other week. Besides work I’ve found myself socialising less and less over the past years. In part […]

I Sometimes Feel Defeated By My Disability – And That’s Okay

Pippa

By Pippa in HUFFPOST.   Last month, Sport England and a number of partnering charities launched a new campaign aimed at people living with long-term health conditions. We Are Undefeatable, they called it – making a statement on behalf of the millions of people living with these illnesses in the UK. As a member of the […]

Pavement Parking in York

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  PAVEMENT PARKING UPDATE FOR FULFORD AREA. Just to keep you up to date, I’ve received the following, and have asked to be kept in touch with any further action is taken, as their action must be proactive. If we call 101 as suggested, we can’t wait for the incident to be attended, as we […]

4 Downsides (And Bright Sides) Of My Illness

Lost

      By Siobhain Simper in The Mighty.   As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]

The Difficulty Of Living With A Fluctuating Condition

Pacing

    By Sally Doherty in The Mighty.   I don’t know about the rest of you, but there is such a difference between my good and bad days. Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not […]

York’s Wheelchair-Accessible Indie Coffee Shops And Cafes

Pippa

  By Pippa, from The Life Of Pippa Blog.   If you’ve ever visited York, you’ll know it’s an absolute goldmine for cute and quirky independent businesses. You could visit a different indie coffee shop for breakfast every weekend, and in my former years as a student (prior to becoming a wheelchair-user), that’s pretty much […]

How My Life Has Changed Since I Developed ME/CFS

Lisa

    By Lisa Alloto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. […]

Cutting Out Toxic People From My Life After Becoming Chronically Ill

Friend

    By Shannon Marie in The Mighty.   I can count my friends on one hand, and I spend a fair amount of time alone. I prefer it this way. I’m often fatigued or otherwise symptomatic of Hashimoto’s with joint pain, brain fog, mood swings or back pain. So a day or two completely alone in […]

Struggling to Accept the Days When Illness Keeps Me From Doing Anything

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By Sally Doherty in The Mighty.   I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

What It’s Really Like To Work Part-Time Because Of Chronic Illness

Work

    By Rachel Calhoun in The Mighty. My life of leisure is so amazing. I only have to work two days a week because I am so financially secure. I get to have days off during the week to do whatever I want while others are working their full time jobs.  I couldn’t keep from […]

Becoming A Wheelchair User: 3 Things I’ve Learned

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  From @creamcrackeredblog.   I became a wheelchair user two years ago, and in that time I’ve really had to work through a lot of anxiety and internalised ableism to become comfortable using my chair out in public. It hasn’t been easy and I still have my wobbles, but I’m now at the point where […]

I Believe You: Three Powerful Words For The Chronically Ill

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    By Laura Chamberlain in Laura’s Pen.   Sometimes, you feel alone in your suffering and misunderstood. Sometimes, all you need is someone to say they believe you… I believe you. Those are three very powerful words. When I put together my post on what you SHOULD say to your chronically ill friend, I received […]

I’m Disabled & I Rely On Single-Use Plastics – Please Don’t Judge Me

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      By Jo Moss in A Journey Through The Fog.   Reading through this month’s writing prompts, the one that sparked my interest the most was ‘Reusing’. When I think of ‘reusing’ I automatically turn to the need to reduce single-use plastic, and the detrimental effect plastic has on our oceans. It’s been […]

Why I’m Disappointed In The Lack Of Awareness About ME/CFS Almost 20 Years Post Diagnosis

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      By Emma Tierney in The Mighty.   We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my […]

Hannah Pearl Discusses Writing With M.E.

Writing

    From Female First.   As Hannah Pearls’ debut novel appears on bookshop shelves, she talks to us of writing – and reading – with M.E. … I’ve always loved books. One of my first memories of school was finding a small gap between pieces of furniture where I could sit and read. Even […]

The Unique Type Of Loneliness That Comes With Chronic Illness

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    By Britt Renee in The Mighty.   It seems like getting familiar with loneliness is inherent in living the chronic illness life. This loneliness doesn’t come from being literally and physically alone, though I’m learning there is a decent amount of “alone time” one has to learn to appreciate when being chronically ill. […]

My Life With M.E. – Exploding The Myths

ME

    by Chrissy Russell. Myalgic encephalomyelitis (M.E.), chronic fatigue syndrome (CFS), Yuppy Flu, post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), systemic exertion intolerance disease (SEID)… The list goes on. Each decade has seen a new name, but the erroneous perception of it remains the same. The Word Health Organisation classifies the disease as Myalgic […]

Don’t Assume I Have A Carer Just Because I’m Disabled

Samantha Renke

  By Samantha Renke in The Metro.   Sometimes people ask me if I have a carer – a question which I find highly inappropriate, ableist and offensive. Still, let’s clear this up: I live alone in London, but I do have a young woman who works for me. I don’t call her a carer, […]

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