Best 24 quotes in «invisible illness quotes» category

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.

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.

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).

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

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.

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

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.

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.

Invisible illnesses exist - within body and mind (you just don’t always see the patients taking their pills).

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.

Schizo. It didn't matter how many times Dr. Gill compared it to a disease or physical disability, it wasn't the same thing. It just wasn't. I had schizophrenia. If I saw two guys on the sidewalk, one in a wheelchair and one talking talking to himself, which would I rush to open a door for, and which would I cross the road to avoid?

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.

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.

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]

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.

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.

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

(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).

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)

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

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

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]

When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.