Personal Stories

Leaving Frailty Behind. A Conversation With Laura Hillenbrand

Laura Hillenbrand

  By Paul Costello in Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, […]

My Disabilities Are Invisible. I Shouldn’t Have To Prove Them To Strangers

Invisible Illness

  By Isabelle Jani-Friend in The Guardian.   I was recently on a packed Central line train into London. Luckily, I managed to take the last priority disabled seat. My osteoporosis and the fatigue I experience meant it would be hard for me to stand for the 40-minute journey to Oxford Circus. I felt a […]

Pacing Is A Simple Concept. So Why Do I Find It So Hard ?

Lost

    By Jo Moss in A Journey Through The Fog.   Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly […]

Anna spends 22 hours a day in bed. But experts hope they’re close to a cure

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      By Melissa Cunningham in The Sydney Morning Herald.   Anna Kerr often spends up to 22 hours a day in a darkened room unable to get out of bed. Following her first pregnancy, the Thornbury mother-of-two felt something was amiss. At first, it was a newfound reaction to wine and coffee, triggering nausea, weakness […]

No One Prepares You For The Grief Of Chronic Fatigue Syndrome

Lonely

    By Asa Lovell  in The Mighty.   No one prepares you for the grief and feelings of inadequacy you get when you have chronic illnesses. They make such a huge impact on your life that they derail you, stop you from achieving the things you’re working for in the time you’d planned. You […]

The Frail Teenager Set To Spend All Of Her Summer Holidays In Her Bedroom

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    By Mark Smith in Wales Online.   Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted. While all her school mates are out enjoying their summer holidays, poor Lola Brandrick can only dream of joining them. The 13-year-old is confined to her bed, constantly exhausted and crippled by widespread […]

Words From A Hidden World

Blog

    By Naomi Whittingham.   Welcome  to my blog.  The main purpose of this site is to bring together my existing work, but I also hope to add new writing from time to time.  I have never blogged before and am looking forward to the freedom of writing as I wish, with full editorial control.  (The downside is […]

Because Of ME, I Can Only Imagine Being The Mum That Others Get To Be

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      By Sophie Cooklynne in The Mighty.   Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world. Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that […]

The Impact Of ME

Scope

  By Jenny in Scope.   Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The […]

When I Can’t Control How Chronic Illness Is Affecting My Body

Chronic

  By Laurel Younis in The Mighty.   OK, here it – the biggest and most important secret you will need to survive chronic illness. The key to surviving chronic illness is surviving it in any way you can. Now I know what you may be thinking, “Really? Is this seriously the advice you’re giving […]

Netflix Sued For Defamation By ‘Afflicted’ Subjects Who Say Docuseries Painted Them As “Crazy Hypochondriacs”

Netflix

    By Erik Pedersen in Deadline.   The 50-page complaint (read it here) was filed Wednesday in Los Angeles Superior Court by defendants including Jamison Hill, Pilar Olave, Jill Edelstein and Bekah Dinnerstein. Referred to in the suit as “the Afflicted Four,” they claim they were “duped by Plaintiffs into participating in a salacious reality […]

Phoebe & Georgina’s Sponsored Kayak !

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    By Georgina & Phoebe in Let’s Do It for Myalgic Encephalomyelitis.   Even a live Second World War grenade  couldn’t stop us! On Sunday the 28th of July we began our quest to conquer a 25 mile kayak to raise money for Invest In ME Research. This journey consisted of a very early start, […]

Finding Accessible Work With A Chronic Illness

Life of Pippa

    From the Life of Pippa Blog.   Since I started blogging, there’s one question I’ve consistently been asked more than any other: how I found my flexible, work from home opportunities. If you don’t already know, I split my time between social media management and content creation in the charity sector, self-employment as […]

‘Dangerous’ Dockless Bikes Blocking Streets, Say Disability Activists

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  By Ella Wills BBC News.   Registered as blind for 15 years, Deborah Persaud travels around London with guide dog Lewis by her side. But on recent walks to work, the pair have faced a new challenge on pavements – dockless bikes for hire. “Lewis has to navigate around them [and] we often end up […]

Aid Without Asking: How To Support Someone With ME

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  By Jonny Foster in #MEAction.   The love of my life battles ME/CFS. It’s a disease that my father has also struggled with since I was a boy, so it’s one I know well. I knew life wasn’t going to be simple when we met, but I dove in head-first anyway. I can’t say […]

“This Is What Disabled Looks Like”: The Sometimes Hard-To-See Line Between Visible And Invisible Disabilities

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  From the CoffeeSpoonie Blog.   There are disabilities we think of as visible, and disabilities we think of as invisible. (Mental illness? Invisible. Quadriplegia? Visible. Autoimmune disease? Invisible. Blindness, with a cane and guide dog? Visible.) Neat little categories that we are expected to sort our disabilities into, to help others understand better when […]

Accessible York – Encouraging Inclusive Tourism In North Yorkshire

Life of Pippa

  From the Life Of Pippa Blog.   Back in September 2013 when I moved to York for university, it’s safe to say my new friends and I fully made the most of life in the city and all it had to offer. As a non-disabled student at the time, there were no barriers holding […]

It’s OK To Feel Angry Or Resentful Sometimes When You Have A Chronic Illness

Chronic Pain

  By Juliana Philippa Kerrest  in The Mighty.   Something I greatly struggle with are the emotional ups and downs that come with dealing with a chronic illness. I have three chronic conditions that have affected me to varying degrees throughout my life: psychological, neurological, and autoimmune. Most of the time, I handle it relatively well; I […]

Hundreds Of Families To Benefit From Claudia’s Law, Which Comes Into Force Today

Claudia

  From YorkMix.   A new law named after Claudia Lawrence is expected to help hundreds of families, allowing them to take control of their missing loved ones’ financial affairs. Named after chef Claudia, who vanished without a trace after leaving her York home a decade ago, Claudia’s Law came into force today Wednesday. Police […]

Preparing For University When You Have A Disability

University

  By Chloe Tear.   Oh how I remember this time well! I actually graduated on Wednesday, but preparing for the whole thing only seems like yesterday. University was such an unknown step, even if it was a step I knew I wanted to take. My health at the time was far from ideal and […]

How To Book Access Theatre Tickets – Seats For Disabled Patrons

Life of Pippa

    From the Life of Pippa Blog.   Ever since I started theatre blogging and my chronic illness-friendly reviews, I’ve had messages asking about how I book my access tickets and ensure my needs are met. It’s one of those things that I’ve been doing for so long now that it’s become second nature, so […]

Glimpsing The World: My Joy And Pain

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    By Naomi Whittingham in A Life Hidden.   There is an indescribable joy in experiencing the outside world after many months or years of incarceration.  The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze.  When darkness and isolation have been the foundation of […]

Post Thirty Four. Planning For A Future With Severe ME.

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  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Straight Talk From Carol Head As She Steps Down From Solve ME

Carol Head

  By Cort Johnson in Health Rising.   ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]

Care for Someone With Severe Myalgic Encephalomyelitis

Severe ME

By Greg Crowhurst in ME Support.   Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins and […]

Disability Comes With An Extortionate And Shocking Price Tag

Samantha Renke

  By Samantha Renke in the Metro.   Do you ever get the feeling you’re being ripped off? Paying over the odds is something every disabled person encounters. Time and time again, we are faced with eye-watering prices for ‘basic’ products and equipment that are labelled as ‘disability’ or ‘specialist’ but have a price tag that is […]

Rambles With Remus

Euan's Guide

    From Euan’s Guide.   Welcome to the first in a series of regular guest blogs by Zoe, a Euan’s Guide Ambassador, and her assistance dog Remus. The two live in Farlie on Scotland’s West Coast and the blog will focus on Zoe’s adventures using an all terrain mobility scooter. Part 1: A New […]

Confessions Of A Chronic Fatigue Skeptic

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    By Shell Pettifer in The Mighty.   “Chronic fatigue, my arse!” I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated […]

What I Hear When You Tell Me ‘But You Look Fine’

Frustration Chronic Illness

  By Melanie Leong  in The Mighty.   Fairly recently, I had this weird experience where a person with a chronic illness threw the “but you look fine!” line on me. I am pretty certain I didn’t respond. In fact, I don’t really recall what happened afterwards because I was in shock. Isn’t it chronic illness code that we […]

An Apology To My Wheelchair

Wheelchair

    From the Creamcrackered.me Blog, dated 11 March 2019.   Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if […]

Please Stop Trying To ‘Fix’ My ME/CFS

Mighty

  By Simone DM in The Mighty.   When you become ill, all you want is for others to be compassionate and understanding. Yet when you come down with something like ME (myalgic encephalomyelitis), that not even your doctor comprehends, it’s a different story. Others are quick to pass judgement, believing you are somehow causing your […]

But Make It Accessible: Wax Poetic Clothing

Natasha Lipman

  By Natasha Lipman.   Hello and welcome to my new blog series “But Make It Accessible”, where I speak to brands that are working to create beautiful and stylish clothes that are also accessible. Rediscovering my love for fashion since becoming a wheelchair user has brought a lot of joy into my life, but […]

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