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.

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

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

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

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.

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

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.

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

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

Chronic illness is hard. Pain is hard. Isolation is hard. The financial cost is hard. Grieving is hard and necessary and sometimes takes far longer than we ever imagined.

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.

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.

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

Many empaths are diagnosed with chronic illnesses such as fibromyalgia, CFS, lupus, and various autoimmune diseases, as well as psychological disorders such as agoraphobia, social anxiety, ADHD, depression, sensory processing disorder, among many others.

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.

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.

We can feel isolated and powerless when living with chronic illness, but what if your story begins to bridge the barrier or open a way for someone to connect? What if your story offers a glimmer of hope to someone standing at the edge of desolation? ...What if your story starts the conversation?

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.

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.

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.

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.

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.

Self-care has become a new priority – the revelation that it’s perfectly permissible to listen to your body and do what it needs.

It is not easy to talk about a condition once dismissed as ‘the career women’s disease’. But women will continue to suffer until we realise the cost of ignoring it

Remember this: You are the expert of your body.

Believing you have chronic pain or illness can cause it to be so. So too, believing you are healing can cure you.

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. . . .

With psychiatric medications, you solve one problem for a period of time, but the next thing you know you end up with two problems. The treatment turns a period of crisis into a chronic mental illness. - Amy Upham

Pain is a portal to transformation, It does not knock politely.

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.

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.

And I didn't know how to say the future was like a language I couldn't speak anymore.

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

What makes it unbearable is your mistaken belief that it can be cured.

Living with long-term suffering in American culture feels like being off-key. Suffering quiets and slows, but our culture prefers a crescendo.

My head aches, my eyes burn, my arms and legs have given up, and my face in the mirror has a grayish cast. The bed, across the room, calls in its unmistakable lover's croon, Come to me, come, only I can make you truly happy, oh, how happy I'll make you, don't resist, remember how you moan with pleasure the instant we touch.....

I’m really tired”, you come to understand, is meaningless, giving the impression all will be well with a good rest and that if you’ve ever been tired, you know what it is to be exhausted.

I have found that the people whom society has deemed to be the weakest are inevitably the strongest.

It is my belief that sometimes we keep secrets and our deepest insecurities because we believe that if other people found them out they would agree and believe them to be true, too.

Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still ... you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.

In any case, when we avoid the legitimate suffering that results from dealing with problems, we also avoid the growth that problems demand from us. It is for this reason that in chronic mental illness we stop growing, we become stuck. And without healing, the human spirit begins to shrivel.

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.

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.

Always find the funny.

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

I love the days when my body cooperates.

Because the truth was I was tired. I was tired of fighting but more importantly I was tired of losing, of being disappointed.

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.

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.

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.

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]

This sort of sickness is a nothingness, really – a state of limbo; neither well enough to be a functioning member of society nor possessing a sign of illness that signals to the world you are sick. There’s no broken arm. Not even a sore throat and hacking cough.

Excuse me, universe,” she whispered to the kitchen floor. “When you almost murdered me today—which was rather brutal, by the way, but I can respect that—were you trying to tell me something?” The universe, very enigmatically, did not respond.

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.

The truth of the matter is, Satan and God may want the exact same event to take place - but for different reasons. Satan's motive in Jesus' crucifixion was rebellion; God's motive was love and mercy. Satan was a secondary cause behind the Crucifixion, but it was God who ultimately wanted it, willed it, and allowed Satan to carry it out. And the same holds true for disease.

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.

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?

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.

Listen, I wanted to say, I don't need your judgment, okay? I have enough to deal with without you contributing, so can we just get on with this so I can get out of here? But I couldn't form the words. Dr. Johnson viewed me as a child, and somehow, under his contemptuous gaze, I had regressed to one. I was frightened and shy, and it was all I could do to answer his questions and count the seconds until the end of the visit.

Chronic rage, by contrast, floods the system with stress hormones long past the allotted time. Over the long term, such a hormonal surplus, whatever may have instigated it, can make us anxious or depressed; suppress immunity; promote inflammation; narrow blood vessels, promoting vascular disease throughout the body;

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.

I didn't want this man touching me in those places. It wasn't that he was being inappropriate, it was just more that he obviously didn't view me as a person, let alone a scared person with actual feelings. He just saw me as yet another scientific specimen there for his own experimenting. I squeezed my eyes shut, cringing the entire time.

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.

Chronic, unrecognized anger and resentment reemerge in our life as depression, which is anger directed against oneself. If pushed further into the unconscious, it can re-emerge as psychosomatic illnesses. Migraine headaches, arthritis, and hypertension are frequently cited examples of chronic suppressed anger.

Our choices get taken away from us when we are not given the proper options, information, and truth. There’s a saying, “You always have a choice.” Not when all the options aren’t available to you! If the truth is hidden in a vault that you don’t have access to, or lost in the past and forgotten, how can you make the right choice?

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.

No one knows our bodies or our subjective experiences like we do. This means we can rest secure in our knowledge of ourselves and what we’re going through, even when the medical profession doesn’t understand or believe us. Migraine is a weird and changing disease. It affects all of us differently, and every attack is a little different than the one before. This means that no one can understand your life, symptoms, or illness like you can. This can be incredibly empowering: you are the expert. But, it also carries great responsibility: to live as happily and as fully as possible, you must listen to your body and trust your instincts.

You stop noticing pain, is the thing. You notice it when it’s really bad, or when it’s different, but… on the rare occasion someone asks me what it’s like to live with RA, I don’t ever know what to say. They ask me if its painful, and I say yes because I know intellectually it must be, because the idea of doing some of the things that other people do without thinking fills me with dread and panic, but I always think about it mechanically. I can’t do x. I don’t want to do y. I don’t continue the thought into I can’t do that because it would hurt. I don’t want to do that because then I would be in pain. You can’t live like that. There’s only so much you can carry quietly by yourself, so you turn an illness into a list of rules instead of a list of symptoms, and you take pills that don’t help, and you do stretches, and you think instead of feeling. You think.

Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.” “Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it. Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it. But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone... A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened... while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.

If you tell someone you have depression, they will often say, "Oh, I've been depressed before, too." The difference lies between being depressed and having depression. Everyone's been depressed at one time or another, but these are far from being the same things. One is a passing mood. The other is a chronic illness that does not come and go, ebb and flow, is here one day and gone the next. The difference between being depressed and having depression is that one is a mood and the other is an illness. One is a momentary bout of melancholy. The other is a debilitating condition that requires medical treatment. Would you feel better about having a cancerous lesion if I likened it to the rash I had last week? The difference between being depressed and having depression is the difference between a mood that will soon pass, and a serious illness that disrupts your ability to function and will take years to treat. The difference between being depressed and having depression is the difference between Cleveland and Bangkok, or your frying pan and the surface of the sun. So, no, we (depressives) do not feel better when you tell us about your rash. We'll do our best to be polite about it, but no, it really doesn't help at all.

Not only does fruit fight cancer, it kills all types of viruses and bacteria. Certain fruits, such as bananas, wild blueberries, apples, and papayas, are the most powerful natural destroyers of viruses on earth. Fruit is also vital to gut health—which is essential to a healthy immune system. For example, the pectin in apples, and the skin, pulp, and fiber in figs and dates, are exceptionally effective at killing and/or clearing out anything that doesn’t belong in your intestinal tract, including fungi such as Candida, worms, and other parasites.

Your gut includes the stomach, small intestine, large intestine (which includes the colon), liver, and gallbladder. The gut is responsible for ensuring that you absorb the nutrients of the food you eat, properly expel waste and toxins, and maintain a strong immune system. Yet not only is it critical for these everyday functions, your gut also holds a life force of its own. Food does not digest just from the physical process of food breakdown (a process scientific study hasn’t fully pieced together); there are also critical spiritual and metaphysical factors involved in digestion. That’s why enlightened beings on the planet employ eating techniques such as slow and thorough chewing; mindful, present eating; prayer before, during, or after meals; and becoming one with your food.

The disorders that psychology associates with the dissonance between what parents say to children and what children know to be reality - from deep insecurities to chronic anxiety to depression - are not to be found among the hunter-gatherers I have known. This is not to claim that they are people who know nothing of mental illness. Rather, it is to look at the absence of a particular kind of illness, one that in my own society is somewhere between common and the norm. The apparent sturdiness of the hunter-gatherer personality, the virtual universality of self-confidence and equanimity, the absence of anxiety disorders and most depressive illnesses - these may well be the benefits of using words to tell the truth.

I have always been told that a person has to accept that the illness is chronic," she says, at the end of our interview. "You can be 'in recovery,' but you can never be 'recovered.' But I don't want to be on disability forever, and I have started to question whether depression is really a chemical thing. What are the origins of my despair? How can I really help myself? I want to honor the other parts of me, other than the sick part that I'm always thinking about. I think that depression is like a weed that I have been watering, and I want to pull up that weed, and I am starting to look to people for solutions. I really don't know what the drugs did for me all these years, but I do know that I am disappointed in how things have turned out." Such is Melissa Sances's story. Today it is a fairly common one. A distressed teenager is diagnosed with depression and put on an antidepressant, and years later he or she is still struggling with the condition. But if we return to the 1950s, we will discover that the depression rarely struck someone as young as Melissa, and it rarely turned into the chronic suffering that she has experienced. Her course of illness is, for the most part, unique to our times.

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.

Physiological stress, then, is the link between personality traits and disease. Certain traits — otherwise known as coping styles — magnify the risk for illness by increasing the likelihood of chronic stress. Common to them all is a diminished capacity for emotional communication. Emotional experiences are translated into potentially damaging biological events when human beings are prevented from learning how to express their feelings effectively. That learning occurs — or fails to occur — during childhood. The way people grow up shapes their relationship with their own bodies and psyches. The emotional contexts of childhood interact with inborn temperament to give rise to personality traits. Much of what we call personality is not a fixed set of traits, only coping mechanisms a person acquired in childhood. There is an important distinction between an inherent characteristic, rooted in an individual without regard to his environment, and a response to the environment, a pattern of behaviours developed to ensure survival. What we see as indelible traits may be no more than habitual defensive techniques, unconsciously adopted. People often identify with these habituated patterns, believing them to be an indispensable part of the self. They may even harbour self-loathing for certain traits — for example, when a person describes herself as “a control freak.” In reality, there is no innate human inclination to be controlling. What there is in a “controlling” personality is deep anxiety. The infant and child who perceives that his needs are unmet may develop an obsessive coping style, anxious about each detail. When such a person fears that he is unable to control events, he experiences great stress. Unconsciously he believes that only by controlling every aspect of his life and environment will he be able to ensure the satisfaction of his needs. As he grows older, others will resent him and he will come to dislike himself for what was originally a desperate response to emotional deprivation. The drive to control is not an innate trait but a coping style. Emotional repression is also a coping style rather than a personality trait set in stone. Not one of the many adults interviewed for this book could answer in the affirmative when asked the following: When, as a child, you felt sad, upset or angry, was there anyone you could talk to — even when he or she was the one who had triggered your negative emotions? In a quarter century of clinical practice, including a decade of palliative work, I have never heard anyone with cancer or with any chronic illness or condition say yes to that question. Many children are conditioned in this manner not because of any intended harm or abuse, but because the parents themselves are too threatened by the anxiety, anger or sadness they sense in their child — or are simply too busy or too harassed themselves to pay attention. “My mother or father needed me to be happy” is the simple formula that trained many a child — later a stressed and depressed or physically ill adult — into lifelong patterns of repression.

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]

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.

How to be there for someone with depression or anxiety 1. Know that you are needed, and appreciated, even if it seems you are not. 2. Listen. 3. Never say ‘pull yourself together’ or ‘cheer up’ unless you’re also going to provide detailed, foolproof instructions. (Tough love doesn’t work. Turns out that just good old ‘love’ is enough.) 4. Appreciate that it is an illness. Things will be said that aren’t meant. 5. Educate yourself. Understand, above all, that what might seem easy to you –going to a shop, for instance –might be an impossible challenge for a depressive. 6. Don’t take anything personally, any more than you would take someone suffering with the flu or chronic fatigue syndrome or arthritis personally. None of this is your fault. 7. Be patient. Understand it isn’t going to be easy. Depression ebbs and flows and moves up and down. It doesn’t stay still. Do not take one happy/ bad moment as proof of recovery/ relapse. Play the long game. 8. Meet them where they are. Ask what you can do. The main thing you can do is just be there. 9. Relieve any work/ life pressure if that is doable. 10. Where possible, don’t make the depressive feel weirder than they already feel. Three days on the sofa? Haven’t opened the curtains? Crying over difficult decisions like which pair of socks to wear? So what. No biggie. There is no standard normal. Normal is subjective. There are seven billion versions of normal on this planet.

Nature’s ultimate goal is to foster the growth of the individual from absolute dependence to independence — or, more exactly, to the interdependence of mature adults living in community. Development is a process of moving from complete external regulation to self-regulation, as far as our genetic programming allows. Well-self-regulated people are the most capable of interacting fruitfully with others in a community and of nurturing children who will also grow into self-regulated adults. Anything that interferes with that natural agenda threatens the organism’s chances for long-term survival. Almost from the beginning of life we see a tension between the complementary needs for security and for autonomy. Development requires a gradual and ageappropriate shift from security needs toward the drive for autonomy, from attachment to individuation. Neither is ever completely lost, and neither is meant to predominate at the expense of the other. With an increased capacity for self-regulation in adulthood comes also a heightened need for autonomy — for the freedom to make genuine choices. Whatever undermines autonomy will be experienced as a source of stress. Stress is magnified whenever the power to respond effectively to the social or physical environment is lacking or when the tested animal or human being feels helpless, without meaningful choices — in other words, when autonomy is undermined. Autonomy, however, needs to be exercised in a way that does not disrupt the social relationships on which survival also depends, whether with emotional intimates or with important others—employers, fellow workers, social authority figures. The less the emotional capacity for self-regulation develops during infancy and childhood, the more the adult depends on relationships to maintain homeostasis. The greater the dependence, the greater the threat when those relationships are lost or become insecure. Thus, the vulnerability to subjective and physiological stress will be proportionate to the degree of emotional dependence. To minimize the stress from threatened relationships, a person may give up some part of his autonomy. However, this is not a formula for health, since the loss of autonomy is itself a cause of stress. The surrender of autonomy raises the stress level, even if on the surface it appears to be necessary for the sake of “security” in a relationship, and even if we subjectively feel relief when we gain “security” in this manner. If I chronically repress my emotional needs in order to make myself “acceptable” to other people, I increase my risks of having to pay the price in the form of illness. The other way of protecting oneself from the stress of threatened relationships is emotional shutdown. To feel safe, the vulnerable person withdraws from others and closes against intimacy. This coping style may avoid anxiety and block the subjective experience of stress but not the physiology of it. Emotional intimacy is a psychological and biological necessity. Those who build walls against intimacy are not self-regulated, just emotionally frozen. Their stress from having unmet needs will be high.

I’m not sure how the ponies happened, though I have an inkling: “Can I get you anything?” I’ll say, getting up from a dinner table, “Coffee, tea, a pony?” People rarely laugh at this, especially if they’ve heard it before. “This party’s ‘sposed to be fun,” a friend will say. “Really? Will there be pony rides?” It’s a nervous tic and a cheap joke, cheapened further by the frequency with which I use it. For that same reason, it’s hard to weed it out of my speech – most of the time I don’t even realize I’m saying it. There are little elements in a person’s life, minor fibers that become unintentionally tangled with your personality. Sometimes it’s a patent phrase, sometimes it’s a perfume, sometimes it’s a wristwatch. For me, it is the constant referencing of ponies. I don’t even like ponies. If I made one of my throwaway equine requests and someone produced an actual pony, Juan-Valdez-style, I would run very fast in the other direction. During a few summers at camp, I rode a chronically dehydrated pony named Brandy who would jolt down without notice to lick the grass outside the corral and I would careen forward, my helmet tipping to cover my eyes. I do, however, like ponies on the abstract. Who doesn’t? It’s like those movies with the animated insects. Sure, the baby cockroach seems cute with CGI eyelashes, but how would you feel about fifty of her real-life counterparts living in your oven? And that’s precisely the manner in which the ponies clomped their way into my regular speech: abstractly. “I have something for you,” a guy will say on our first date. “Is it a pony?” No. It’s usually a movie ticket or his cell phone number. But on our second date, if I ask again, I’m pretty sure I’m getting a pony. And thus the Pony drawer came to be. It’s uncomfortable to admit, but almost every guy I have ever dated has unwittingly made a contribution to the stable. The retro pony from the ‘50s was from the most thoughtful guy I have ever known. The one with the glitter horseshoes was from a boy who would later turn out to be straight somehow, not gay. The one with the rainbow haunches was from a librarian, whom I broke up with because I felt the chemistry just wasn’t right, and the one with the price tag stuck on the back was given to me by a narcissist who was so impressed with his gift he forgot to remover the sticker. Each one of them marks the beginning of a new relationship. I don’t mean to hint. It’s not a hint, actually, it’s a flat out demand: I. Want. A. Pony. I think what happens is that young relationships are eager to build up a romantic repertoire of private jokes, especially in the city where there’s not always a great “how we met” story behind every great love affair. People meet at bars, through mutual friends, on dating sites, or because they work in the same industry. Just once a coworker of mine, asked me out between two stops on the N train. We were holding the same pole and he said, “I know this sounds completely insane, bean sprout, but would you like to go to a very public place with me and have a drink or something...?” I looked into his seemingly non-psycho-killing, rent-paying, Sunday Times-subscribing eyes and said, “Sure, why the hell not?” He never bought me a pony. But he didn’t have to, if you know what I mean.

It’s normally agreed that the question “How are you?” doesn’t put you on your oath to give a full or honest answer. So when asked these days, I tend to say something cryptic like, “A bit early to say.” (If it’s the wonderful staff at my oncology clinic who inquire, I sometimes go so far as to respond, “I seem to have cancer today.”) Nobody wants to be told about the countless minor horrors and humiliations that become facts of “life” when your body turns from being a friend to being a foe: the boring switch from chronic constipation to its sudden dramatic opposite; the equally nasty double cross of feeling acute hunger while fearing even the scent of food; the absolute misery of gut–wringing nausea on an utterly empty stomach; or the pathetic discovery that hair loss extends to the disappearance of the follicles in your nostrils, and thus to the childish and irritating phenomenon of a permanently runny nose. Sorry, but you did ask... It’s no fun to appreciate to the full the truth of the materialist proposition that I don’t have a body, I am a body. But it’s not really possible to adopt a stance of “Don’t ask, don’t tell,” either. Like its original, this is a prescription for hypocrisy and double standards. Friends and relatives, obviously, don’t really have the option of not making kind inquiries. One way of trying to put them at their ease is to be as candid as possible and not to adopt any sort of euphemism or denial. The swiftest way of doing this is to note that the thing about Stage Four is that there is no such thing as Stage Five. Quite rightly, some take me up on it. I recently had to accept that I wasn’t going to be able to attend my niece’s wedding, in my old hometown and former university in Oxford. This depressed me for more than one reason, and an especially close friend inquired, “Is it that you’re afraid you’ll never see England again?” As it happens he was exactly right to ask, and it had been precisely that which had been bothering me, but I was unreasonably shocked by his bluntness. I’ll do the facing of hard facts, thanks. Don’t you be doing it too. And yet I had absolutely invited the question. Telling someone else, with deliberate realism, that once I’d had a few more scans and treatments I might be told by the doctors that things from now on could be mainly a matter of “management,” I again had the wind knocked out of me when she said, “Yes, I suppose a time comes when you have to consider letting go.” How true, and how crisp a summary of what I had just said myself. But again there was the unreasonable urge to have a kind of monopoly on, or a sort of veto over, what was actually sayable. Cancer victimhood contains a permanent temptation to be self–centered and even solipsistic.