Invisible Chronic Illness Quotes

Mental illness People assume you aren’t sick unless they see the sickness on your skin like scars forming a map of all the ways you’re hurting. My heart is a prison of Have you tried?s Have you tried exercising? Have you tried eating better? Have you tried not being sad, not being sick? Have you tried being more like me? Have you tried shutting up? Yes, I have tried. Yes, I am still trying, and yes, I am still sick. Sometimes monsters are invisible, and sometimes demons attack you from the inside. Just because you cannot see the claws and the teeth does not mean they aren’t ripping through me. Pain does not need to be seen to be felt. Telling me there is no problem won’t solve the problem. This is not how miracles are born. This is not how sickness works.

I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.

People who don't see you every day have a hard time understanding how on some days--good days--you can run three miles, but can barely walk across the parking lot on other days,' [my mom] said quietly.

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.

I felt entirely invisible and uncomfortably obvious all at the same time, sitting there in practically nothing in front of this stranger who was ignoring me.

Often the pain that makes us feel most stuck is not our suffering; it is experiencing distress in the presence of people who expect us to get better faster than we can.

I had learned quickly that life doesn't always go the way I want it to, and that's okay. I still plod on.

Sure, society understands visible shackles-- they get the symbolism of the wheelchair, of prosthetics, of a bumper sticker reading disabled veteran, but they still struggle for comprehension of the profound, invisible shackles that an illness such as [Chronic Fatigue] puts on a person's body.

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

This seems like one of the hardest things about being sick in the way you’re sick: being sick makes you stressed. But being stressed makes you sicker.

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.

There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if not one has any grasp of what it is you suffer from and the symptoms wax and wane? How do you describe a disease that's not always there?

I know many people who are suspicious of diagnoses—they think of them as labels that reduce or stigmatize. I knew, already, that a diagnosis was not going to answer all my questions. But I craved a diagnosis because it is a form of understanding.

I thought having a chronic illness would make my life detour in ways I didn't want to accept, but I've learnt that have a chronic illness made the only detours that are worth the growth.

The tendency in many parts of medicine is, if we can’t measure it, it doesn’t exist, or the patient is cuckoo.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

But the fatigue of physical dysfunction, I came to recognize, is as different from normal sleep deprivation as COVID-19 is from the common cold. It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.

I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.

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

Self-stigma can be just a big a problem as the negative attitudes of others.

Ethical loneliness is what happens when wrongs are compounded by going cruelly unacknowledged.

The weekend was a much-needed breath of fresh air; Monday always seemed to not only take that breath right back, but add a few extra pounds to my shoulders as well.

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.

Knowledge brings the hope of treatment or cure. And even if there is no cure, a diagnosis is a form of knowing (the word “diagnosis” derives from the Greek gignōskein, “to know”) that allows others to recognize our experience and enables us to tell its story

Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it's worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but as a whine.

It dawns on me that maybe I'm just terrifically lazy; that I might be appropriating other people’s invisible sicknesses and disorders and scribbling them on the clipboard at the end of my bed to fool the nurses; so I can indulge in rest cures all day, every day. That I’m even fooling myself.

If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.

To have pain is to have certainty; to hear about pain is to have doubt.” The same was true of all my symptoms, none of which could be seen. In those months I was lonely in a way I never had been before. I could taste the solitude of the human body like brine in my mouth, a taste that never left me. •

It is a perfectly normal side-effect for someone to have depression because he cannot move or function in his job. That is all that it is: a side-effect. Those with disabilities and debilitating illnesses probably have more to get depressed about than others.

The emotional journey has been as hard as the physical one. The fear I feel, in combination with busy doctors who don’t have time to listen, has really affected me.

The video was still playing, although I didn't know why. It seemed as if the able-bodied dancers were mocking me.

We cannot back down from the idea that we are deserving of support and understanding in our time of need, but the reality is we might not get it from the people we expect it from.

It is often what we cannot see that matters the most.

Only a few friends realized at the time how much physical suffering I was undergoing. We are bad at recognizing the suffering of others unless we are given clear-cut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.

We have a duty tonight. Everybody, and guys this for you as well because I know you know women. You have a duty tonight. You only have to tell one other person what you heard. Just tell them what you heard, or ask them have you ever heard of this? If the answer is no, share what you learn tonight. That’s all. You don’t have to do anything else. You just have to tell somebody else. You have to take whatever stigma people think that is there. You have to take it. It’s not male or female. It has nothing to do with that. It has to do with, here’s a disease you don’t know about and you need to know about it. It’s that simple. It’s not rocket science. [Whoopi Goldberg on endometriosis awareness from the 2009 Blossom Ball]

My name is CRPS, or so they say But I actually go by; a few different names. I was once called causalgia, nearly 150 years ago And then I had a new name It was RSD, apparently so. I went by that name because the burn lived inside of me. Now I am called CRPS, because I have so much to say I struggle to be free. I don't have one symptom and this is where I change, I attack the home of where I live; with shooting/burning pains. Depression fills the mind of the body I belong, it starts to speak harsh to self, negativity growing strong. Then I start to annoy them; with the issues with sensitivity, You'd think the pain enough; but no, it wants to make you aware of its trembling disability. I silently make my move; but the screams are loud and clear, Because I enter your physical reality and you can't disappear. I confuse your thoughts; I contain apart of your memory, I cover your perspective, the fog makes it sometimes unbearable to see. I play with your temperature levels, I make you nervous all the time - I take away your independance and take away your pride. I stay with you by the day & I remind you by the night, I am an awful journey and you will struggle with this fight. Then there's a side to me; not many understand, I have the ability to heal and you can be my friend. Help yourself find the strength to fight me with all you have, because eventually I'll get tired of making you grow mad. It will take some time; remember I mainly live inside your brain, Curing me is hard work but I promise you, You can beat me if you feed love to my pain. Find the strength to carry on and feed the fears with light; hold on to the seat because, like I said, it's going to be a fight. But I hope to meet you, when your healthy and healed, & you will silenty say to me - I did this, I am cured is this real? That day could possibly come; closer than I want- After all I am a disease and im fighting for my spot. I won't deny from my medical angle, I am close to losing the " incurable " battle.

hierarchies of diseases exist among patients and healthcare professionals...and when it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list

In July and August 2011 Simon Wessely ran a media campaign with the BBC and the broadsheets, successfully vilifying patients who had justifiably criticised his research. In his case, the marginalisation of ME patients was not ‘unintentional’. It was active and deliberate.

Autoimmunity is internalized by patients as an opportunity for the ultimate self-management project. But in fact it is a manifestation of a flawed collective project. If it is an indictment of anything, it is an indictment not of our personhood but of our impulse to see social problems as being about our personhood, instead of a consequence of our collective shortcomings as co-citizens of this place and time.

Most people had trouble accepting the fact that Chloe was ill. Fibromyalgia and chronic pain were invisible afflictions, so they were easy to dismiss. Eve was healthy, so she would never feel Chloe’s bone-deep exhaustion, her agonizing headaches or the shooting pains in her joints, the fevers and confusion, the countless side effects that came from countless medications. But Eve didn’t need to feel all of that to have empathy. She didn’t need to see Chloe’s tears or pain to believe her sister struggled sometimes. Neither, for that matter, did Dani. They understood.

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.

It never occurred to me that somehow women did know about it. It just never occurred to me. Yes I am wearing sneakers too. You are in a suit, I am comfortable. So when she explained to me that this was the first event really of its kind, it floored me. So I called my daughter who is in her 30s now and I said “do you know what endometriosis is?” She said, “what? Have to pack the pack the busters.” I said “no man, you have never heard of it?” No she said. I do not know what it is, and it occurred to me that my 30-year-old daughter who I told about endometriosis and it didn’t stick. If she didn’t know, and she is one of the hippest people I know, and her daughter doesn’t know, she has 19-year-old and she is a 13-year-old. The boy, we don’t care much about if he knows about it so much. There is other stuff for him to learn. Like how to roll a condom, things like that. You know, and it occurred to me that if they didn’t know that there were hundreds of thousands girls out there that don’t know. It is not because their mothers don’t want to tell them, because it’s not religion, it’s pure ignorance. We don’t know, we don’t have the information, we have it now, and so now is why this very first gathering is happening. Now is why we’re all sitting here looking really fabulous as you are... [Whoopi Goldberg on endometriosis awareness from the 2009 Blossom Ball]

EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny’s body and brain recovering properly after expending any energy, even just watching TV.

don’t believe I will get better,” Daudet wrote, “. . . yet I always behave as if my damned pains were going to disappear by tomorrow morning.”)

one scholar puts it, “if a physician cannot identify the cause of a disease, it means that it is procured by the Devil.

the hospital, I always felt like Alice at the Mad Hatter’s tea party: I had woken up in a world that seemed utterly logical to its inhabitants but quite mad to me.

is difficult to be a patient for long without coming up against the hard truth that what you are searching for and what your doctor is offering are two entirely different things.

The word “inflammation” comes from the Latin verb “inflammare,” or “to set on fire,

As the surgeon Atul Gawande wrote of the medical profession, “Nothing is more threatening to who you think you are than a patient with a problem you cannot solve.

Dancing with a spinal cord injury is a challenge like no other, but I aspired to prove to myself that I could still be phenomenal dancer even with an SCI

It is unbearable—and yet I bear it.

As the chronically ill know, to be alive is to be in uncertainty.

A doctor’s job, like a gambler’s, is intimately tied up with failure; the house always wins over time.

How to describe intermittent severe pain on the same scale as constant middle-range pain, which I found more debilitating?

what happens to patients who don’t have the energy or the means to persevere in connecting their disconnected doctors, he said, “They fall through the cracks, and they suffer in their own world, alone.

I was not myself, but if I was not myself, how did I know that? It was as if the old me, the authentic me, were inside, struggling to break free of the forces that had inhabited its body. The ghost within.

The medical uncertainty compounds patients' own uncertainty. Because my unwellness did not take the form of a disease I understood, with a clear-cut list of symptoms and a course of treatment, even I at times interpreted it as a series of signs about my very existence. Initially, the illness seemed to be a condition that signified something deeply wrong with me⁠—illness as a kind of semaphore. Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again. It took years before I realized that the illness was not just my own; the silence around suffering was our society's pathology.

The actual encounter was always confusing, eleven minutes of liminal contact in which I tried to conduct myself in a way that would make the doctor like me, in the hope they would take some true interest in my plight. But their day was full of tests to order, bureaucracy to cut through, an education that taught them not to say, "I don't know what's wrong with you." And so we stood together in a tiny antiseptic room, the doctor and patient, a world apart.

I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV.

I got used to being uncomfortable, and I internalized the idea that my mentioning my discomfort made me fussy—“The princess and the pea,” my mother once said, in irritation, making it clear that I was demanding too much when I complained.

In 2019, a study of patients at a clinic in Iran found that “laughter yoga”—gentle yoga that includes laughing—was more effective than anti-anxiety medication in controlling symptoms of irritable bowel syndrome, which are worsened by stress.

Recognizing that chronic childhood stress leads to chronic adult illness and relationship challenges can be enormously freeing. If you have been wondering why you’ve been struggling a little too hard for a little too long with your emotional and physical well-being—feeling as if you’ve been swimming against some invisible current that never ceases—this aha can come as a welcome relief. Finally, you can see the current. And you see how it’s been working steadily against you all of your life.

It must be noted that there is no proof that it is justified to apply the label somatisation to such conditions as chronic fatigue syndrome and several more illnesses that established medicine has so for failed to explain scientifically. ……Don't hesitate to ask questions about scientific evidence behind this talk about somatisation. Be persistent, because a diagnosis of somatisation is definitely not an innocuous label. It will close various doors and lead (to) treatments that usually get nowhere.

three important characteristics experts agree are often found in chronic illness: the symptoms are invisible, symptoms and disease progression vary from person to person, and the disease progression and worsening or improvement of symptoms are impossible to predict.

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

be sick in this way is to have the unpleasant feeling that you are impersonating yourself. When you’re sick, the act of living is more act than living. Healthy people have the luxury of forgetting that their existence depends on a cascade of precise cellular interactions. Not you.

On my message boards a recurrent theme was having a partner who didn’t help, who didn’t get it, who even judged and blamed. Even partners who did help often couldn’t feel the wave of need engulfing the ill person. And my god, the need. It felt shameful to need other people so much.

The more I talked to sick people. the more I found that what is most disturbing for many of is is that grace has become a kind of moral requirement in sickness: If you must be ill, at least be improved by your illness. And yet conditions under which grace can emerge may not be present.

These reports from the IOM, AHRQ, and NIH demonstrate how much we have learned about ME/CFS and how much we still do not know. We do not understand its pathogenesis, and we do not have a diagnostic test or a cure. However, these recent reports, summarizing information from more than 9000 articles, should put the question of whether ME/CFS is a "real" illness to rest. When skeptical physicians, many of whom are unaware of this literature, tell patients with ME/CFS that "there is nothing wrong," they not only commit a diagnostic error: They also compound the patients' suffering.

He has so little energy in his body that he can only walk to the bathroom on the other side of the hallway twice a day. After a few meters he is worn out, much worse than after the marathons he used to run. He was a triathlete, he earned a brown belt in judo, became Dutch champion in hockey, until he contracted pneumonia in 2005 and never recovered. Ever since, he has a headache, vertigo, and insomnia, but worst of all the fatigue: after minimal effort his muscles would lose all their strength and take days to recover. Only after a few years did he get a diagnosis: Chronic Fatigue Syndrome (CFS).

millions live with illnesses that aren’t merely “invisible” to others but are not easily identified in laboratories or imaging centers, either. For as many technological and lifestyle resources as we have at our disposal, for as “good” as our health is compared to centuries past, larger numbers of us are sick.

To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework.

Without answers, at my most desperate, I came to feel (in some unarticulated way) that if I could just tell the right story about what was happening, I could make myself better. If only I could figure out what the story was, like the child in a fantasy novel who must discover her secret name, I could become myself again.

To have a poorly understood disease is to be brought up against every flaw in the U.S. health care system; to collide with the structural problems of a late-capitalist society that values productivity more than health; and to confront the philosophical problem of conveying an experience that lacks an accepted framework. Even

Americans' embrace of the "natural approach" is a rebuke to the dominant social structures of our time—Big Pharma, Big Medicine, Big Tech. But in a crucial way it is also in thrall to one of the most powerful contemporary Western delusions: namely, the idea that we can control the outcomes of our lives, in this case through self-purification.

The new name 'Chronic Fatigue Syndrome' is far too benign. It trivialises. How seriously would you take something called 'Chronic Thirst Syndrome'? And yet, diabetes is a very serious condition. 'Disabling Fatigue and Immune Dysfunction Syndrome' does a bit better; while more research should allow something more specific. (Thompson, 1992:27)

CBT is a much publicised and debated psychotherapeutic intervention for ME/CFS….The premise that cognitive therapy (eg. changing ‘illness beliefs’) and graded activity can ‘reverse’ or cure this illness is not supported by post-intervention outcome data. In routine medical practice, CBT has not yielded clinically significant outcomes for patients with ME/CFS.

As Virginia Woolf testified in On Being Ill, “English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache. . . . The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.

For the last 48 years, myalgic encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder but for the last 29 years a group of UK psychiatrists (known as the Wessely School) have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring”.

After all, a terrible anxiety attends chronic illness. Over time, it becomes difficult to untangle the suffering from symptoms like pain from the suffering inflicted by the anxiety over the possibility of more pain, and worse outcomes, in the future. This does not mean that the illness is in the mind; rather, the mind—that machine for making meaning—makes endless meanings of its new state, which may themselves influence the experience.

Like many in their baby boomer generation, they saw doctors as unquestionable experts. You didn’t go to them unless you had a high fever or a bad fall or a wound that needed stitching. In that case, you got a diagnosis, you took medicine or had surgery, and you got better, more or less in that order. But if the doctor told you nothing was wrong, nothing was wrong. My parents believed in the power of Western medicine, and therefore so did I.

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow. The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

This is something that has been going on forever,” Craig Spencer, the director of global health in emergency medicine at Columbia University, says about the variability of human response to infection. “I wouldn’t be surprised if people are walking about with long Epstein-Barr virus, or long influenza. We all know someone who is low energy, who’s told to work harder. We have all heard about chronic Lyme sufferers, and those with ME/CFS. But they get written off.” Spencer understands something about how infections can do long-term damage, because he contracted Ebola while working in Guinea, fell ill upon his return to New York City, and then struggled with the virus’s ongoing effects. (Studies have suggested that the Ebola virus may linger in the body for years.) The difference between long COVID and other infection-associated illnesses is that it is happening “on such a huge scale—unlike anything we’ve seen before. It is harder for the medical community to write off,” Spencer told me. Indeed, many researchers I spoke with for this book hope that the race to understand long COVID will advance our understanding of other chronic conditions that follow infection, transforming medicine in the process.

Another person posted this to the group Hashimoto’s 411: I can’t do this any more, I am beside myself and can’t stop crying. Today, I received a disability denial letter from Social Security stating that my condition is not severe enough to qualify. . . . I don’t know what to do, I feel like I am no longer living but just existing and miserable because I feel so sick. My unemployment extended benefits are going to run out and then we’ll be in big trouble if we can’t pay our bills, which include lots of medical bills because I don’t have insurance. I just don’t want to be here any more, and think my husband would be better off not having to deal with me, and with my life insurance he would be much better off financially.

The word “wisdom” comes from the Old English words wis (knowledge, learning) and doom (judgment). Perhaps ill people do, in a sense, become wise through encountering doom, and as a result they become new versions of themselves, having made it through some of the hazards of the course, experiencing what the poet John Ashbery calls “the charity of the hard moments.” Those encounters perhaps allow us to see ourselves—and our mortal condition—more clearly. But it would be false not to observe that this knowledge is born of loss, of resignation to a condition that forces us to give up on aspects of ourselves we had hoped we might develop. Wisdom, in this understanding, is knowledge coupled with the wound that comes from encountering doom.

research shows that the experiences of patients, and the attitudes of health professionals, is mixed; nonetheless, we conclude that testimonial injustice – the deflation of CFS/ME patients’ testimony on the ground of unjustified negative stereotyping – appears to be a continued problem within mainstream healthcare across a range of settings and countries. Furthermore, it would seem that the testimonial injustice is sustained and also accompanied by hermeneutical injustice because the dominant group (health professionals) may routinely fail to provide adequate training about CFS/ME, leading to prejudiced deflations of patient credibility, and/or an unfair lack of shared concepts with which to make mutual sense of the experience of the patient.

In pain, exhausted, and angry, I, too, was swept up in futile pageantry. I signed up for appointments, I waited, I got my hopes up, I went and sat in shoddy, sad offices with pictures of sailboats on the wall and greasily thumbed magazines on side tables sourced from bulk office furniture suppliers. The actual encounter was always confusing, eleven minutes of liminal contact in which I tried to conduct myself in a way that would make the doctor like me, in the hope they would take some true interest in my plight. But their day was full of tests to order, bureaucracy to cut through, an education that taught them not to say, “I don’t know what’s wrong with you.” And so we stood together in a tiny, antiseptic room, the doctor and the patient, a world apart.

Being heard by your doctor isn’t just an emotional need but a physical one: patients benefit clinically from feeling cared for. The emotional and the physical, science is learning, are more intertwined than we once understood. Many studies have suggested that emotional care—interpersonal warmth—has a measurable effect on patients’ outcomes. For example, the incidence of severe diabetes complications in patients of doctors who rate high on a standard empathy scale is a remarkable 40 percent lower than in patients whose doctors do poorly on the empathy scale, Danielle Ofri, an internist at New York’s Bellevue Hospital, reports in What Doctors Feel. “This is comparable,” she points out, “to the benefits seen with the most intensive medical therapy for diabetes.

Biopsychosocial discourse often portrays these patients as possessing unhealthy personality traits, such as ‘maladaptive perfectionism’ [67,68]; yet such assertions are not well supported, many studies find no significant differences between ME/CFS patients and the general population with regard to distinctive personality profiles [69–72]. A Swedish study of physicians’ attitudes to CFS found that physicians often downgrade the seriousness of this illness to ‘non-disease’ status and view patients as being ‘illness focused’, ‘demanding’, and ‘medicalising’ [73]. Given community-based doctors have limited knowledge of ME/CFS [74] and doctors display high levels of skepticism in this illness domain [75], it is unsurprising that many patients with ME/CFS report problematic clinical interactions [29–31,76]. Patient surveys conducted by patient organizations confirm high levels of patient dissatisfaction in the medical encounter.

Many doctors (and medical students) display uncertainty about whether or not CFS/ME is real…Patients with CFS/ME often experience suspicion by health professionals…The (often unintentional) marginalization of many CFS/ME patients represents a failure in medical professionalism, one that may lead to further ethical and practical consequences both for progressive research into CFS/ME and for ethical care... With one exception, doctors attending the seminar were either defensive or silent. In their eyes, the ME patients present were conforming to stereotype (angry, unscientific, unreasonable) and therefore they – the doctors – would not engage with them. Paradoxically, these doctors were themselves conforming to another stereotype, as described by the speaker: ‘Knowledge-formation is also influenced by social and cultural factors. Such encounters have an inherent power differential; there is significant potential…to be unjust from an epistemic point of view.

It is unsurprising that social isolation or loneliness have been strongly associated with depression,18 suicide,19 anxiety,20 insomnia,21 fear and the perception of threat.22 It’s more surprising to discover the range of physical illnesses that they can cause or exacerbate. Dementia,23 altered brain function,24 high blood pressure, heart disease and strokes,25 lowered resistance to viruses,26 even accidents,27 are all more common among chronically lonely people. One study suggests that loneliness has a comparable impact on physical health to smoking fifteen cigarettes a day.28 The doctrine has also helped to create what some people describe as a spiritual void: when human life is conceived as a series of transactions, when relationships are recast in purely functional terms, when personal gain counts for everything and pro-social values for nothing, the sense of meaning and purpose is sucked from our lives. We find ourselves in a state of alienation, of anomie, an experience of dislocation that extends beyond the more immediate determinants of mental health. Our psychological and economic welfare depends on our connection with others. Of all the fantasies human beings entertain, the idea that we can go it alone is the most absurd, and perhaps the most dangerous. We stand together or we fall apart.

Generalized Social Anxiety In contrast to people with specific social anxieties, you may be afraid in a wide variety of situations. You might feel that people are judging everything you do and you might set unreasonable standards of perfection for yourself. This condition is called generalized (or discrete) social anxiety. Generalized social anxiety accounts for 80 percent of all cases of social anxiety. Often, people with generalized social anxiety get caught in a vicious cycle. Because they are overly anxious in many situations, they act in clumsy and awkward ways, which in turn makes them feel even more discouraged and anxious. This cycle often results in depression and chronic stress. Generalized social anxiety can affect almost every aspect of your life. This has been the case for Toni, a college senior. In high school, I hardly had any friends. I didn’t participate in any extracurricular activities and managed to get by with average grades. Because I attend a large state university, I am even more invisible. So far, I have avoided any class that has any interaction with my peers, such as discussion groups or labs. As graduation approaches, I need to decide what type of career I want. The thought of job interviews terrifies me. I am considering grad school but would need recommendations to apply. I haven’t even spoken to most of my professors, and the ones who know me probably can’t say anything good about me. As a result, I’m really depressed. When I imagine the future, I can’t see myself being happy. I’ll probably move back to my parents’ house after graduation. I know they are disappointed in me, and that makes me feel like a complete failure.

The severe exacerbation of symptoms following exercise, as seen in CFS patients, is not present in other disorders where fatigue is a predominant symptom such as depression, rheumatoid arthritis, systemic lupus erythematosus, or multiple sclerosis. 10,11

Individuals are often stigmatized and told their illness isn’t real… People with [ME] CFS face an incredible burden just getting doctors to take their symptoms seriously

(The blood vessels) must be constricted so tight in the brain that little blood gets through. Perhaps it is one of the hormones that constricts blood vessels. Perhaps an infection of the blood vessels. Perhaps it is an excessive sensitivity of the blood vessels to adrenaline….CFS is a devastating physiologic process that undermines the body’s energy and the brain’s cognitive ability….CFS is not…an illness behaviour for lazy people. The consequences of this illness weigh heavily not only on the victim, but also on family, community and society.

The most important limitation of [clinical] guidelines is that the recommendations may be wrong... Practices that are sub-optimal from the patient’s perspective may be recommended to help control costs, serve societal needs, or protect special interests (those of doctors…or politicians, for example).

As Susan Sontag pointedly observes in Illness as Metaphor, illnesses we don’t understand are frequently viewed as manifestations of inner states. The less we understand about a disease or a symptom, the more we psychologize, and often stigmatize, it.

My body felt like a vow that had been irrevocably broken.

autoimmune diseases are one third genetic and two thirds environmental