Chronic Illness Quotes Quotes

“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.”
― Michael Bihovsky

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

“Doctors don't believe anything unless you can prove it to them.”
― Audrey Niffenegger, The Time Traveler's Wife

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

“Those of us with chronic pain have something unique to offer, not in spite of our pain, but because of it. It's okay to grieve the losses of chronic illness. It's okay to be broken; everyone is in some way. Just because we're unfixable doesn't mean we're worthless.”
― Allison Alexander, Super Sick: Making Peace with Chronic Illness

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

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

“I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, 'I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.”
― Michael Bihovsky

“Psychologisation describes the emphasis on psychological factors where there is little or no evidence to justify it (1). It's a process where relevant findings are ignored or downplayed in favour of data from incomplete examinations, flawed research or anecdotal reports.
In a clinical context, differential diagnoses may be dismissed prematurely while psychological explanations are readily accepted.
Psychologisation does not refer to situations where there is sound evidence that psychological factors play a significant role, or where all the arguments are discussed and the psychological explanations are deemed the most persuasive.”
― Ellen Goudsmit

“If I have found promise, it is because I’ve squeezed it from the seemingly impossible.”
― Naomi Whittingham

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

“For those who have been dealing with ME/CFS as a disease over time, social distancing with avoidance of infections has been a way of life. If anything, seeing the rest of the world trying to understand how to effectively achieve this way of life has been a déjà vu because for many, this has been a way of life since their diagnosis.”
― Ronald Tompkins

“You have no idea what I have been through or how hard I have tried to wait out, overcome, and make the best of a devastating illness that has slowly made all of my dreams more and more difficult to achieve.”
― Whitney Dafoe

“Remember that healing others may very well be the clearest path to healing ourselves.”
― Michael Bihovsky

“Can we become wiser and better people because of major medical problems? Absolutely. But that’s *our* choice. It’s not automatically included in the package – a package that is filled with pain and sadness and disappointment. Anyone who chooses to find a ray of light in that darkness, to use the pain to benefit themselves and other people, has my utmost awe and respect. But that doesn’t erase the horror of the packaging. If we forget that, empathy is lost.

Sickness is not a gift – far more often, it feels like a curse. The people who take that curse and nevertheless continue to try, to fight, to hope – they are the gifts. Love those people well. And love them even more on days when trying, fighting, and hoping are simply out of reach.”
― Michael Bihovsky

“I can only imagine how hard it must be for you, the friends and caretakers, to be there for us when you know in your heart that there is nothing you can do to make it better. So I want to tell you right now that you CAN make it better. You do. Just by being there. Just by reaching out, and making time and space for us in your lives and in your hearts. Just by saying, “I know I can never understand what you’re going through – but I believe you. And I love you. And I’m here.”
― Michael Bihovsky

“Pushing our pain aside...diminishes our human experience.”
― Cindee Snider Re, Discovering Hope: Beginning the Journey Toward Hope in Chronic Illness

“This is not an argument with psychiatry. Mental and physical illness are equally real and horrible. As with any long-term illness, some people with ME/CFS will develop comorbid depression and other mental health problems – where CBT can be of help alongside good quality general management. The argument here is with a flawed model of causation assuming efficacy for CBT and GET while taking no significant account of varying clinical presentations and disease pathways.”
― Charles Shepherd

“We are learning that before the body can become a temple, it first must become our home.”
― Lucy H. Pearce, Medicine Woman: Reclaiming the Soul of Healing

“Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness.”
― Betsy Keller

“For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies.

Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness.”
― Betsy Keller

“Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies.”
― Michael Bihovsky

“In the extra innings phase, you can learn from your life and live with vigor and generosity and gratitude. There is the belief that when you lose one sense, the other senses make up for it and become sharper. . . Maybe in extra innings, we discover new skills, such as patience and resilience, even as we accept that what we lost won't come back.”
― Karen Duffy, Backbone: Living with Chronic Pain without Turning into One

“Colin had just accomplished the impossible. He had broken down the walls around my heart. The walls I had been building far before my illnesses but had grown even sturdier since my diagnosis. And for the first time, it felt like I'd been set free.”
― Brooke Gilbert, The Paris Soulmate

“That’s not baggage. It’s not acceptable to call your illnesses baggage.”
― Brooke Gilbert, The Paris Soulmate

“It was like I was sick with a new disorder and the diagnosis was Colin.”
― Brooke Gilbert, The Paris Soulmate

“I had fought for this moment. I had fought for my life, what health I had, the ability to live my life, and the ability to love. And he was worth every moment I had fought so hard for. I never could have imagined what I was truly fighting so desperately for. But there he sat.”
― Brooke Gilbert, The Paris Soulmate

“Incurable, hopeless, excessive, organic, ill: this is the language of chronic disease, of the static bodies it indexes and the defective temporalities it engenders. The modality of the chronic, then, is less safely habitual than the compromised, the unconjugated, the "would" in the sense of being able or unable to realize one's will.”
― Elizabeth Freeman, Beside You in Time: Sense Methods and Queer Sociabilities in the American Nineteenth Century

“I make the turn, I see the highway in the rear view
Someday it’ll all be left behind
My soul making its way back home

And all the good times in my head
They keep me company
The last seconds I drift to sleep
Dreaming of you holding me”
― Jasmine McMorran