Chronic Illness Quotes

Sometimes I think illness sits inside every woman, waiting for the right moment to bloom. I have known so many sick women all my life. Women with chronic pain, with ever-gestating diseases. Women with conditions. Men, sure, they have bone snaps, they have backaches, they have a surgery or two, yank out a tonsil, insert a shiny plastic hip. Women get consumed.

The question is not how to get cured, but how to live.

She has fought many wars, most internal. The ones that you battle alone, for this, she is remarkable. She is a survivor.

Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.

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.

We would not be able to impact future generations if family was not one of our top priorities.

God has been there with us every step of the way.

I encourage readers recovering from a kidney transplant to heed the advice of their medical practitioners.

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

Behind every stressful thought is the desire for things to be other than they are.

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

Surrender is an incredibly difficult topic in light of chronic illness, because loss is often continued and sustained.

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.

I started feeling afraid of my own body, like it was a torture chamber I’d been trapped inside.

That is what chronic illness is . . . a disconnect between what our souls can do and what our bodies can do.

I'm tired of having to struggle for what seems to come easily to everyone else.

She was always fighting a battle but her smile would never tell you so.

The core belief in having to be strong enough, characteristic of many people who develop chronic illness, is a defence. The child who perceives that her parents cannot support her emotionally had better develop an attitude of “I can handle everything myself.” Otherwise, she may feel rejected. One way not to feel rejected is never to ask for help, never to admit “weakness” — to believe that I am strong enough to withstand all my vicissitudes alone.

You spend a lot of time thinking about how awful the prison is rather than envisioning your future.

Somewhere inside that hurting body, there is something better, something stronger, something real.

As with many life-altering events, an autoimmune illness is almost guaranteed to cause you to re-evaluate your priorities.

Courage wasn't only fighting your circumstances; sometimes making peace with your circumstances required more courage.

Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly's arthritis was like: as if some big old cow had got into her house and wouldn't go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it. When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly's parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn't there, and they preferred for Molly to go along with the pretense.

Physically, mentally, emotionally -- it seems like every part of me is broken in one way or another.

Let us be today’s Christians. Let us not take fright at the boldness of today’s church. With Christ’s light let us illuminate even the most hideous caverns of the human person: torture, jail, plunder, want, chronic illness. The oppressed must be saved, not with a revolutionary salvation, in mere human fashion, but with the holy revolution of the Son of Man, who dies on the cross to cleanse God’s image, which is soiled in today’s humanity, a humanity so enslaved, so selfish, so sinful.

I am not hurt,” she said, “I am in pain.

Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.

I create beautiful art, so I can look back on the life my body fell short of in such a way that it brings me peace.

I saw a meme the other day with a picture of Marilyn Manson and Robin Williams. It said about the former, this isn’t the face of depression, and about the latter, this is. This really struck a chord and it’s been on my mind since then. As someone who has continuously dipped in and out of chronic depression and anxiety for close to three decades now, and I’ve never previously spoken about the subject, I finally thought it was time I did. These days it’s trendy for people to think they’re cool and understanding about mental illness, posting memes and such to indicate so. But the reality is far different to that. It seems most people think if they publicly display such understanding then perhaps a friend will come to them, open up, and calmly discuss their problems. This will not happen. For someone in that seemingly hopeless void of depression and anxiety the last thing they are likely to do is acknowledge it, let alone talk about it. Even if broached by a friend they will probably deny there is a problem and feel even more distanced from the rest of the world. So nobody can do anything to help, right? No. If right now you suspect one of your friends is suffering like this then you’re probably right. If right now you think that none of your friends are suffering like this then you’re probably wrong. By all means make your public affirmations of understanding, but at least take on board that an attempt to connect on this subject by someone you care about could well be cryptic and indirect. When we hear of celebrities who suffered and finally took their own lives the message tends to be that so many close friends had no idea. This is woeful, but it’s also great, right? Because by not knowing there was a problem there is no burden of responsibility on anyone else. This is another huge misconception, that by acknowledging an indirect attempt to connect on such a complex issue that somehow you are accepting responsibility to fix it. This is not the case. You don’t have to find a solution. Maybe just listen. Many times over the years I’ve seen people recoil when they suspect that perhaps that is the direct a conversation is about to turn, and they desperately scramble for anything that can immediately change the subject. By acknowledging you’ve heard and understood doesn’t mean you are picking up their burden and carrying it for them. Anyway, I’ve said my piece. And please don’t think this is me reaching out for help. If this was my current mindset the last thing I’d ever do is write something like this, let alone share it.

All parents set out with expectations, hopes and dreams for their child. When a child is diagnosed with a health problem, these aspirations are altered. While one parent is hoping to see their child graduate from university, another is praying that they can live pain free

Do you know about the spoons? Because you should. The Spoon Theory was created by a friend of mine, Christine Miserandino, to explain the limits you have when you live with chronic illness. Most healthy people have a seemingly infinite number of spoons at their disposal, each one representing the energy needed to do a task. You get up in the morning. That’s a spoon. You take a shower. That’s a spoon. You work, and play, and clean, and love, and hate, and that’s lots of damn spoons … but if you are young and healthy you still have spoons left over as you fall asleep and wait for the new supply of spoons to be delivered in the morning. But if you are sick or in pain, your exhaustion changes you and the number of spoons you have. Autoimmune disease or chronic pain like I have with my arthritis cuts down on your spoons. Depression or anxiety takes away even more. Maybe you only have six spoons to use that day. Sometimes you have even fewer. And you look at the things you need to do and realize that you don’t have enough spoons to do them all. If you clean the house you won’t have any spoons left to exercise. You can visit a friend but you won’t have enough spoons to drive yourself back home. You can accomplish everything a normal person does for hours but then you hit a wall and fall into bed thinking, “I wish I could stop breathing for an hour because it’s exhausting, all this inhaling and exhaling.” And then your husband sees you lying on the bed and raises his eyebrow seductively and you say, “No. I can’t have sex with you today because there aren’t enough spoons,” and he looks at you strangely because that sounds kinky, and not in a good way. And you know you should explain the Spoon Theory so he won’t get mad but you don’t have the energy to explain properly because you used your last spoon of the morning picking up his dry cleaning so instead you just defensively yell: “I SPENT ALL MY SPOONS ON YOUR LAUNDRY,” and he says, “What the … You can’t pay for dry cleaning with spoons. What is wrong with you?” Now you’re mad because this is his fault too but you’re too tired to fight out loud and so you have the argument in your mind, but it doesn’t go well because you’re too tired to defend yourself even in your head, and the critical internal voices take over and you’re too tired not to believe them. Then you get more depressed and the next day you wake up with even fewer spoons and so you try to make spoons out of caffeine and willpower but that never really works. The only thing that does work is realizing that your lack of spoons is not your fault, and to remind yourself of that fact over and over as you compare your fucked-up life to everyone else’s just-as-fucked-up-but-not-as-noticeably-to-outsiders lives. Really, the only people you should be comparing yourself to would be people who make you feel better by comparison. For instance, people who are in comas, because those people have no spoons at all and you don’t see anyone judging them. Personally, I always compare myself to Galileo because everyone knows he’s fantastic, but he has no spoons at all because he’s dead. So technically I’m better than Galileo because all I’ve done is take a shower and already I’ve accomplished more than him today. If we were having a competition I’d have beaten him in daily accomplishments every damn day of my life. But I’m not gloating because Galileo can’t control his current spoon supply any more than I can, and if Galileo couldn’t figure out how to keep his dwindling spoon supply I think it’s pretty unfair of me to judge myself for mine. I’ve learned to use my spoons wisely. To say no. To push myself, but not too hard. To try to enjoy the amazingness of life while teetering at the edge of terror and fatigue.

In response to threat and injury, animals, including humans, execute biologically based, non-conscious action patterns that prepare them to meet the threat and defend themselves. The very structure of trauma, including activation, dissociation and freezing are based on the evolution of survival behaviors. When threatened or injured, all animals draw from a "library" of possible responses. We orient, dodge, duck, stiffen, brace, retract, fight, flee, freeze, collapse, etc. All of these coordinated responses are somatically based- they are things that the body does to protect and defend itself. It is when these orienting and defending responses are overwhelmed that we see trauma. The bodies of traumatized people portray "snapshots" of their unsuccessful attempts to defend themselves in the face of threat and injury. Trauma is a highly activated incomplete biological response to threat, frozen in time. For example, when we prepare to fight or to flee, muscles throughout our entire body are tensed in specific patterns of high energy readiness. When we are unable to complete the appropriate actions, we fail to discharge the tremendous energy generated by our survival preparations. This energy becomes fixed in specific patterns of neuromuscular readiness. The person then stays in a state of acute and then chronic arousal and dysfunction in the central nervous system. Traumatized people are not suffering from a disease in the normal sense of the word- they have become stuck in an aroused state. It is difficult if not impossible to function normally under these circumstances.

That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super-comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.

It is like walking down a street and every so often someone beats the shit out of you. You mostly heal, but some injuries just don’t, and then you go out and walk some more, and someone comes by and beats the shit out of you again.

And the deal with so many chronic illnesses is that most people won't want to believe you. They will tell you that you look great, that it might be in your head only, that it is likely stress, that everything is okay. None of these are the right things to say to someone whose entire existence is a fairly consistent torture of the body and mind. They say it because they are well-intentioned usually, because they wish you the best, but they also say it because you make them uncomfortable. Your existence is evidence of death. . . .

It got worse still as time went on because people did not sympathize with you any more. They couldn't do enough for you at first, and that helped, and then they got bored with your troubles. But your troubles went on just the same and you had to bear them alone.

Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.

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.

Depression affects almost 80% of migraine sufferers at one time or another. People with migraine, especially chronic migraine, also are more likely to experience intense anxiety and to have suicidal tendencies. If we want to live happy and joyful lives with migraine, it is vital that we acknowledge and deal with the emotional realities of the disease.

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.

My alarm goes off at 5:50 a.m. First thing I do is check to make sure I'm not dead. If I am, in fact, still alive, I usually sob uncontrollably until there's nothing left in my tear ducts but salt dust, then grope blindly through my apartment to the bathroom, where I say a little prayer for a hole to open beneath my building and swallow us all.

It's not easy to diagnose because depending where the endometrial deposits are, the symptoms can be quite different. It's an unrecognized problem among teenage girls, and it's something that every young woman who has painful menstruation should be aware of ... it's a condition that is curable if it's caught early. If not, if it's allowed to run on, it can cause infertility, and it can really mess up your life. [Author Hilary Mantel on being asked about being a writer with endometriosis, Nov 2012 NPR interview]

For some reason the word “chronic” often has to be explained. It does not mean severe, though many chronic conditions can be exceptionally serious and indeed life-threatening. No, “chronic” means persistent over time, enduring, constant. Diabetes is a chronic condition, but measles is not. With measles, you contract it and then it is gone. It can sometimes be fatal, but is never chronic. Manic depression, in other words, is something you have to learn to live with. There are therapies which may help some people to function and function for the most part happily and well. Sometimes a talking therapy, sometimes pharmaceutical intervention helps.

At every level, from the microcellular to the psychological, exercise not only wards off the ill effects of chronic stress; it can also reverse them. Studies show that if researchers exercise rats that have been chronically stressed, that activity makes the hippocampus grow back to its preshriveled state. The mechanisms by which exercise changes how we think and feel are so much more effective than donuts, medicines, and wine. When you say you feel less stressed out after you go for a swim, or even a fast walk, you are.

Suddenly, in the space of a moment, I realized what it was that I loved about Britain - which is to say, all of it. Every last bit of it, good and bad - Marmite, village fetes, country lanes, people saying 'mustn't grumble' and 'I'm terribly sorry but', people apologizing to me when I conk them with a nameless elbow, milk in bottles, beans on toast, haymaking in June, stinging nettles, seaside piers, Ordnance Survey maps, crumpets, hot-water bottles as a necessity, drizzly Sundays - every bit of it. What a wondrous place this was - crazy as fuck, of course, but adorable to the tiniest degree. What other country, after all, could possibly have come up with place names like Tooting Bec and Farleigh Wallop, or a game like cricket that goes on for three days and never seems to start? Who else would think it not the least odd to make their judges wear little mops on their heads, compel the Speaker of the House of Commons to sit on something called the Woolsack, or take pride in a military hero whose dying wish was to be kissed by a fellow named Hardy? ('Please Hardy, full on the lips, with just a bit of tongue.') What other nation in the world could possibly have given us William Shakespeare, pork pies, Christopher Wren, Windsor Great Park, the Open University, Gardners' Question Time and the chocolate digestive biscuit? None, of course. How easily we lose sight of all this. What an enigma Britain will seem to historians when they look back on the second half of the twentieth century. Here is a country that fought and won a noble war, dismantled a mighty empire in a generally benign and enlightened way, created a far-seeing welfare state - in short, did nearly everything right - and then spent the rest of the century looking on itself as a chronic failure. The fact is that this is still the best place in the world for most things - to post a letter, go for a walk, watch television, buy a book, venture out for a drink, go to a museum, use the bank, get lost, seek help, or stand on a hillside and take in a view. All of this came to me in the space of a lingering moment. I've said it before and I'll say it again. I like it here. I like it more than I can tell you.

Emotional competence requires the capacity to feel our emotions, so that we are aware when we are experiencing stress; the ability to express our emotions effectively and thereby to assert our needs and to maintain the integrity of our emotional boundaries; the facility to distinguish between psychological reactions that are pertinent to the present situation and those that represent residue from the past. What we want and demand from the world needs to conform to our present needs, not to unconscious, unsatisfied needs from childhood. If distinctions between past and present blur, we will perceive loss or the threat of loss where none exists; and the awareness of those genuine needs that do require satisfaction, rather than their repression for the sake of gaining the acceptance or approval of others. Stress occurs in the absence of these criteria, and it leads to the disruption of homeostasis. Chronic disruption results in ill health. In each of the individual histories of illness in this book, one or more aspect of emotional competence was significantly compromised, usually in ways entirely unknown to the person involved. Emotional competence is what we need to develop if we are to protect ourselves from the hidden stresses that create a risk to health, and it is what we need to regain if we are to heal. We need to foster emotional competence in our children, as the best preventive medicine.

Carla's description was typical of survivors of chronic childhood abuse. Almost always, they deny or minimize the abusive memories. They have to: it's too painful to believe that their parents would do such a thing. So they fragment the memories into hundreds of shards, leaving only acceptable traces in their conscious minds. Rationalizations like "my childhood was rough," "he only did it to me once or twice," and "it wasn't so bad" are common, masking the fact that the abuse was devastating and chronic. But while the knowledge, body sensations, and feelings are shattered, they are not forgotten. They intrude in unexpected ways: through panic attacks and insomnia, through dreams and artwork, through seemingly inexplicable compulsions, and through the shadowy dread of the abusive parent. They live just outside of consciousness like noisy neighbors who bang on the pipes and occasionally show up at the door.

Emotional competence requires • the capacity to feel our emotions, so that we are aware when we are experiencing stress; • the ability to express our emotions effectively and thereby to assert our needs and to maintain the integrity of our emotional boundaries; • the facility to distinguish between psychological reactions that are pertinent to the present situation and those that represent residue from the past. What we want and demand from the world needs to conform to our present needs, not to unconscious, unsatisfied needs from childhood. If distinctions between past and present blur, we will perceive loss or the threat of loss where none exists; and • the awareness of those genuine needs that do require satisfaction, rather than their repression for the sake of gaining the acceptance or approval of others. Stress occurs in the absence of these criteria, and it leads to the disruption of homeostasis. Chronic disruption results in ill health.

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.

Several years ago, researchers at the University of Minnesota identified 568 men and women over the age of seventy who were living independently but were at high risk of becoming disabled because of chronic health problems, recent illness, or cognitive changes. With their permission, the researchers randomly assigned half of them to see a team of geriatric nurses and doctors—a team dedicated to the art and science of managing old age. The others were asked to see their usual physician, who was notified of their high-risk status. Within eighteen months, 10 percent of the patients in both groups had died. But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services. These were stunning results. If scientists came up with a device—call it an automatic defrailer—that wouldn’t extend your life but would slash the likelihood you’d end up in a nursing home or miserable with depression, we’d be clamoring for it. We wouldn’t care if doctors had to open up your chest and plug the thing into your heart. We’d have pink-ribbon campaigns to get one for every person over seventy-five. Congress would be holding hearings demanding to know why forty-year-olds couldn’t get them installed. Medical students would be jockeying to become defrailulation specialists, and Wall Street would be bidding up company stock prices. Instead, it was just geriatrics. The geriatric teams weren’t doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications. They saw that arthritis was controlled. They made sure toenails were trimmed and meals were square. They looked for worrisome signs of isolation and had a social worker check that the patient’s home was safe. How do we reward this kind of work? Chad Boult, the geriatrician who was the lead investigator of the University of Minnesota study, can tell you. A few months after he published the results, demonstrating how much better people’s lives were with specialized geriatric care, the university closed the division of geriatrics.