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“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 Invisible Kingdom: Reimagining Chronic Illness
― The Invisible Kingdom: Reimagining Chronic Illness
“It hurts to live after someone has died. It just does. It can hurt to walk down a hallway or open the fridge. It hurts to put on a pair of socks, to brush your teeth. Food tastes like nothing. Colors go flat. Music hurts, and so do memories. You look at something you’d otherwise find beautiful—a purple sky at sunset or a playground full of kids—and it only somehow deepens the loss. Grief is so lonely this way.”
― Becoming
― Becoming
“Time, as far as my father was concerned, was a gift you gave to other people.”
― Becoming
― Becoming
“Self-care has become a new priority – the revelation that it’s perfectly permissible to listen to your body and do what it needs.”
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“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.”
―
“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.”
―
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Tiffany’s 2025 Year in Books
Take a look at Tiffany’s Year in Books, including some fun facts about their reading.
612 books
|
78 friends
572 books
|
612 friends
640 books
|
34 friends
482 books
|
100 friends
2,275 books
|
78 friends
1,254 books
|
96 friends
2,253 books
|
68 friends
2,314 books
|
17 friends
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