Chronic Illness Stigma Quotes

“Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.”
― Joseph Dumit

“And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.”
― Meghan O'Rourke, The Invisible Kingdom: Reimagining Chronic Illness

“Living with long-term suffering in American culture feels like being off-key. Suffering quiets and slows, but our culture prefers a crescendo.”
― K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers

“She said that being a woman means everyone hates your body, and your body hates you.”
― Kristen O'Neal, Lycanthropy and Other Chronic Illnesses

“I have found that the people whom society has deemed to be the weakest are inevitably the strongest.”
― Michael Bihovsky

“The next time someone tells you that they are struggling with an illness – listen. Even if they look fine. Even if you’d rather talk about something else. Don’t condescend, don’t ignore, and please: don’t disappear. You may feel certain that if they just got out of the house more, or “stopped dwelling on it,” or tried this great holistic diet, that all their problems would magically disappear. But no matter how certain you are, and no matter how well-intentioned, you have no idea whatsoever what’s going on inside of another person’s body. But that person knows. And if you truly love them, you can start by trusting them.”
― Michael Bihovsky

“With a strange logic, [Rod Liddle] asserts that because ME patients deny that they have a psychiatric disorder, this proves they have a psychiatric disorder.

Meanwhile, people are quietly dying of ME. ME sufferer Emily Collingridge died, aged 30; Victoria Webster died at just 18. People don’t die from ‘exercise phobia’. ME is not ‘lethargy’ and ‘aches and pains’, as Liddle claims. Severe ME is lying in a darkened room, alone, in agonising pain, tube-fed, catheterised, too weak to move or speak.”
― Tanya Marlow

“And now he had acquired the wisdom to admit that sometimes experienced his disdain for “weak, sick people” because he was frightened by any suggestion he could ever become that.”
― James C. Coyne

“Self-stigma can be just a big a problem as the negative attitudes of others.”
― Megan A. Arroll

“If I only could explain
how much I miss
that precious moment when I was free
from the shackles of chronic pain.”
― J.J.Toivonen

“Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.”
― Nina Muirhead

“He said that my problem was that I was perfectly healthy and had the illusion that I would be able bodied forever. I could only begin understanding his problem if I gave up that illusion and that would be very difficult, given how healthy I was. I understand, I mistakenly said, and he said no you don’t.”
― James C. Coyne

“Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’?

This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, view themselves as healthy, and increase their exercise. The NHS guidelines amalgamate ME and Chronic Fatigue Syndrome, assuming symptoms are caused by deconditioning and ‘exercise phobia’. Sufferers are offered Graded Exercise to increase fitness, and Cognitive Behavioural Therapy (CBT) to rid them of their ‘false illness beliefs’.”
― Tanya Marlow

“The Wessely School rejects the significant body of biomedical evidence demonstrating that chronic “fatigue” or “tiredness” is not the same as the physiological exhaustion seen in ME/CFS and persists in believing that they have the right to demand a level of “evidence‐based” definitive proof that ME/CFS is not an “aberrant belief” as they assert, when their biopsychosocial model of “CFS/ME” that perpetuates their own aberrant belief about the nature of ME/CFS has been exposed by other psychiatrists as being nothing but a myth.”
― Malcolm hopper

“ME sufferers know full well that there is no present cure for this debilitating illness but equally they do not expect or understand why there is substantial denial within the medical profession of the existence of ME/CFS as a physical condition.”
― Nina Muirhead

“What about the claim, by the PACE trial, that Graded Exercise Therapy and CBT can treat ME? This is a trial where you could enter moderately ill, get worse in the trial, and be declared ‘recovered’ at the end. Even the recent follow-up study conceded that, long-term, Graded Exercise and CBT are no better for ME than doing nothing. Investigative journalists and academics alike have dismissed the PACE trial as ‘clinical trial amateurism’.

Like MS or epilepsy, which were also once wrongly believed to be psychiatric disorders, ME is a neurological disease, and the World Health Organisation lists it as such. I am too weak to walk more than a few metres, needing to lie in bed 21 hours a day. With the little energy I have, I am an ME patient activist.”
― Tanya Marlow

“M.E. isn't just 'exercise phobia': it is a physical illness.”
― Tanya Marlow

“The Medical Research Council’s PACE Trial of behavioural interventions for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) attracted considerable opposition from the outset and the Principal Investigators had difficulty in recruiting a sufficient number of participants. PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation.
The MRC’s PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.”
― Malcolm hopper

“There is rightful objection to the denial of appropriate investigations and to the nationwide implementation of behavioural modification as the sole management strategy for the nosological disorder ME/CFS. That strategy is believed to be based on (i) the commercial interests of the medical and permanent health insurance industry for which many members of the Wessely School work and (ii) the dissemination of misinformation about ME/CFS by the Wessely School, whose members also act as advisors to UK Government agencies including the DWP, which it is understood has specifically targeted “CFS/ME” as a disorder for which certain State benefits should not be available.”
― Malcolm hopper

“ME/CFS is a complex condition that affects every organ system in the body. There is evidence of inflammation at the cellular and biochemical levels: in the muscles, brain and spinal cord in patients with ME/CFS. The name for this illness has had a huge impact on the medical, scientific and patient communities – how it is viewed and how patients are treated by the medical community (160).”
― Alison C. Bested