Invisible Illness Quotes

“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.”
― Emm Roy, The First Step

“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.”
― Jennifer Starzec, Determination

“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.”
― Jennifer Starzec, Determination

“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.”
― Joseph Dumit

“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.”
― K.J. Ramsey, This Too Shall Last: Finding Grace When Suffering Lingers

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

“Not all battles are visible and neither are the victories.”
― Brittany Burgunder

“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

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

“If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.”
― Toni Bernhard

“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

“Not all battles or victories are visible.”
― Brittany Burgunder

“hierarchies of diseases exist among patients and healthcare professionals...and when it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list”
― Charlotte Blease

“These reports from the IOM, AHRQ, and NIH demonstrate how much we have learned about ME/CFS and how much we still do not know. We do not understand its pathogenesis, and we do not have a diagnostic test or a cure. However, these recent reports, summarizing information from more than 9000 articles, should put the question of whether ME/CFS is a "real" illness to rest. When skeptical physicians, many of whom are unaware of this literature, tell patients with ME/CFS that "there is nothing wrong," they not only commit a diagnostic error: They also compound the patients' suffering.”
― Anthony L. Komaroff

“He has so little energy in his body that he can only walk to the bathroom on the other side of the hallway twice a day.

After a few meters he is worn out, much worse than after the marathons he used to run. He was a triathlete, he earned a brown belt in judo, became Dutch champion in hockey, until he contracted pneumonia in 2005 and never recovered. Ever since, he has a headache, vertigo, and insomnia, but worst of all the fatigue: after minimal effort his muscles would lose all their strength and take days to recover. Only after a few years did he get a diagnosis: Chronic Fatigue Syndrome (CFS).”
― Ellen de Visser

“As twisted as it sounds, I was so happy that I had received a diagnosis.”
― Bethany Stahl, Endometriosis: It's Not in Your Head, It's in Your Pelvis

“It is often what we cannot see that matters the most.”
― Brittany Burgunder

“I fake being normal better than most normal people fake being sane.”
― Jonathan Harnisch, Sex, Drugs, and Schizophrenia

“Some days I survive by accident, not hope. The pain never stops—it just changes costume. And still, somewhere in the static, there’s a flicker of magic: not in healing, but in enduring. That’s the human condition—staying alive with no good reason, except that part of you refuses to vanish quietly.”
― Jonathan Harnisch, Sex, Drugs, and Schizophrenia

“I don’t hate the world for no reason. I hate it because it broke me and kept going like nothing happened.”
― Jonathan Harnisch, Sex, Drugs, and Schizophrenia

“I am sitting next to a middle-aged Midwestern blonde from Shakopee, Minnesota. She is unremarkable; from the outside she looks less unkempt than some, a veneer of solidity that makes me wonder what she's doing here. Then she tells her story. Her thirty-year-old daughter, her best friend as she described her, had planned a big fiftieth birthday party for her. She had set up catering, had had a cake delivered to her mom's house. A few hours before the party, she had been with her mom setting up tables and making a playlist, and then left to go to her apartment to change clothes. She said to her mother what she said every time they parted, "I love loving you," and walked out the door. She never showed up for the party. She had gone home and hanged herself. This mother, that veneer I had misrecognized, was a husk, all that was left of a body destroyed by the unknown becoming known. "What had I missed?" she asked.

What was lurking inside the body of her daughter that day? What was underneath the party planning and the love of loving her mother? What could that young woman not bear to know, not bear to feel?”
― P. Carl, Becoming a Man: The Story of a Transition

“The severe exacerbation of symptoms following exercise, as seen in CFS patients, is not present in other disorders where fatigue is a predominant symptom such as depression, rheumatoid arthritis, systemic lupus erythematosus, or multiple sclerosis. 10,11”
― Jo Nijs

“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

“What do we get out of people thinking we’re fine? I mean, I know I get threatening letters on our dashboard when we’re upstate and we park in a handicapped space. You get teachers who don’t believe you when you need a break, and people not giving up seats on the subway, and your dad thinking you’re fine. How would your life actually be harder if you looked sick?”
― Hannah Moskowitz, Sick Kids in Love

“I am not my chronic illness. I am a person. LOL.”
― Jonathan Harnisch, Jonathan Harnisch: An Alibiography

“He wasn’t dying—he was being harvested. Flayed alive by nerves that refused silence, each breath shredded like lungs packed with razors. A blink drew blood. A thought detonated fire. His studio became a mausoleum, and he, its invalid—crucified, disowned by his own biology. He had begged for the compound that once shackled the torment—denied. They called it withdrawal; he knew it as state-sanctioned mutilation. His fingers clawed through endless typos, desperate to name the unnamable. Even his phone collapsed mid-sentence, unable to carry one more fragment of his possession. He wasn’t sick. He was erased. Invalidated. A failed experiment rotting in plain view, too grotesque for rescue. And still he burned.”
― Jonathan Harnisch, Sex, Drugs, and Schizophrenia

“This isn’t life. It’s unimaginable, torturous hell- ugly, endless & godless.”
― Jonathan Harnisch, Sex, Drugs, and Schizophrenia

“so much of it is invisible — the pain, the tension, the storm beneath the skin. it’s a trap made of body and mind and spirit all at once. stress becomes an echo chamber where even meaning itself hurts. but to name it, to see it clearly, is to begin freeing it. that’s the start of healing — turning survival into understanding.”
― Jonathan Harnisch, Living Colorful Beauty

“sometimes the pain’s at a ten, the to-do list’s at a hundred, and the only smart move left is to shut down completely — not out of weakness, but because survival’s its own full-time job.”
― Jonathan Harnisch, Living Colorful Beauty

“Hope is the medicine when there isn't any cure.”
― Jonathan Harnisch, Living Colorful Beauty