Invisible Illness

The Ending Suffering Project for ME/CFS, Fibromyalgia, Long COVID, and Allied Disorders

By Cort Johnson in Health Rising. Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a […]

The Challenges Of Living With An Invisible Illness

By Angie Collins-Burke, RN, and Suzanne Cronkwright KEY POINTS Those with an invisible illness or disability often face continual judgment from others. Symptoms such as fatigue and brain fog can lead to feelings of anger, isolation, and helplessness. Coping skills include lowering your expectations, picking your battles, and practicing self-compassion. I didn’t give much thought […]

Why Certain Illnesses Remain Mysterious

  By Sarah Ramsay in The Paris Review.   When I first began research for my book about women with mysterious illnesses, I was overwhelmed. No two women were alike. The number of illnesses that qualified as mysterious was staggering. Lyme, post-treatment Lyme disease syndrome, candida, Epstein-Barr, Ehlers-Danlos, polycystic ovary syndrome, subclinical hypothyroid, dysautonomia, irritable […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

  By Kim Quindlen in Thought Catalog.    Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for […]

To Those Who Find My Illness ‘Hard To Understand’ When They See Me Smiling

    By Tiffany Early in The Mighty.   My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]

You Don’t Look Sick: What It’s Like Living With An Invisible Illness

By Laura Abernethy in Metro.   A year ago, we launched the You Don’t Look Series. Over the last 12 months, we’ve chatted to people from across the UK about their experiences of living with an invisible illness. Most people have symptoms almost every day but because their condition is hard to see, they are […]

Care for Someone With Severe Myalgic Encephalomyelitis

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 […]

You Don’t Look Sick: ‘People Say ME Isn’t Real But Trust Me – I Deal With It Everyday’

    By Laura Abernethy in The Metro.   Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see. They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong. You Don’t […]

When Children Don’t Get Well

From Utting-Wolff Spouts.   When children don’t get well, when there is no adequate treatment, and they remain ill, we need to step in and fight for their right to be part of society. When children don’t get well, time passes by, sometimes like treacle, sometimes quickly,  with the realisation that another school year has whipped […]

You Don’t Look Sick: ‘My Skin Condition Causes A Lot Of Pain But I Gave Up My Blue Badge Because Of Abuse’

  By Laura Abernethy in Metro.     Welcome to You Don’t Look Sick, our new weekly series about invisible illness and disabilities. There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. Lots of people suffer from debilitating symptoms and daily struggles […]

9 Rounds Of Electroshock Therapy. 6 Years Lost. All Because Her Doctors Got It Horribly Wrong

    By Michele Lent Hirsch in Cosmopolitan.   She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure. She’s aware […]

Invisible Disabilities: Just Because You Can’t See it Doesn’t Mean it’s Not Real

  From Healthy Living Facts.   Have you ever heard diseases like fibromyalgia called an “invisible disability?” Essentially, invisible disabilities are conditions that can’t be seen but still have serious effects on your ability to live a normal life. The term makes a distinction between conditions like cerebral palsy, where the effects of the disability are […]

‘Invisible’ Disabilities: Car Park Confrontation Prompts Call For Greater Recognition

By Laura Collins and Lucy Robinson in ABC.Net Australia.   Fed up with judgemental looks, comments and confrontations, a young South Australian woman living with a debilitating disease is calling for more recognition of ‘invisible’ disabilities. Key points: Sarah Larcombe has undergone seven major surgeries in nine years She has a disability permit and is […]

Friends In Australia’s Parliament For People With ME And Chronic Fatigue Syndrome

  By Sasha Nimmo in ME Australia.   Three senators have formed Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s federal parliament. The Parliamentary Friendship group is co-chaired by Western Australian Greens Senator Jordon Steele-John,  Tasmanian Liberal Senator Jonathan Duniam and Queensland Labor Senator Claire Moore. This group will provide a […]

Northern Rail ‘Sorry’ Over Mobility Scooter Mishap

  From BBC News.   Northern Rail has apologised after a passenger who is disabled was told she could not travel with her mobility scooter despite being sold a ticket. The 31-year-old, who has autism and the debilitating Ehlers-Danlos syndromes, filmed her experience on board a train on her way to a wedding on Thursday. […]

This Teenage Girl Just Made A Vital Point About ‘Invisible Illness’

    From indy100.   It’s worth remembering that not all illnesses are visible. Yasmin Swift, a 19-year-old hairdresser from Ashford, Kent, knows this all too well; around seven months ago, she was diagnosed with idiopathic pulmonary arterial hypertension, a rare lung disorder whose cause is unknown. Symptoms vary in terms of severity, but they can […]

What I Wish People Knew About My Illness, Even When I Look Fine

  By Deema H in The Mighty.   I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make […]

Disabilities Are Not Always Obvious. Don’t Judge Us Without Knowing The Full Story

  By Nia Sims in The Guardian.   Too many of my friends have told me of being abused by strangers when using an accessible (or “disabled”) parking space. Sometimes there is a note left under the windscreen wiper – “you should be ashamed of yourself, I saw you and there’s nothing wrong with you. […]

Disabled Woman Says Stansted Airport Refused To Offer Her Help Because She ‘Didn’t Look Ill’

  By Julia Buckley in The Independent.   A disabled passenger has branded Stansted Airport staff “disgusting” after she was denied assistance because she “didn’t look disabled”. Nathalie Allport-Grantham, 23, was flying to Nice with Ryanair on 31 December when a member of staff refused her the assistance she had confirmed ahead of her flight. She had […]

Thousands Share Their Invisible Disabilities On Twitter

  From BBC News.   Using the hashtag #InvisiblyDisabledLooksLike, Twitter users across the world with hidden disabilities have been sharing pictures and stories to challenge society’s perceptions. Many people live with hidden disabilities – a physical, mental, sensory or neurological condition which don’t have physical signs but are painful, exhausting and isolating. They must also deal […]

‘But You Don’t Look Disabled ?’ What Living With An Invisible Disability Is Really Like

  By Mared Parry in The Tab.   I shouldn’t have to prove I’m disabled by showing my scars If you were sat opposite me on the train or if you looked at my Instagram, you’d never guess I’m disabled. You’d never guess I had major surgery three weeks ago, or that I’ve been having […]

Using Mobility Aids When You Have An Invisible Illness

    “What happened to you, then?” There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a […]

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