"I'm Tired..." Motif Study by Jillian Jope

2025-02-03 14:35:39 UTC

"Particularly with matters like chronic pain/chronic illness, a cure is seen as something that can itself be liberating: a way to simply be in one's body without feeling pain"(75).

2025-02-03 14:35:53 UTC

" To abandoned our disabled selves and bodies and assimilate into a perhaps unachievable abled skin." (75)

25edeady — 2025-02-03 14:36:23 UTC

"We take turns lying in the middle of the circle while people drum around us. We are white and off the beat but trying our hardest. The rhythm and vibrations from the drumming are supposed to offer healing energy. We are told to state our intention upon entering the circle"(78).

2025-02-03 14:36:28 UTC

"I know only that in chasing to achieve the person I once was, I will miss the person I have become" (81).

2025-02-03 14:36:40 UTC

"My therapist doesn't help. He is supposed to be experienced with working with chronically ill people, but he doesn't seem to understand factors like 'not having the same amount of energy every day'" (77).

25atheophilos — 2025-02-03 14:36:51 UTC

"I still want to feel like I did on that hike in the woods, but I begin to wonder if that is impossible. I am afraid to hope. I am battered by hoping. I am depressed" (79).

2025-02-03 14:36:53 UTC

"Get Well soon. Race for a cure. Pray for a cure."(75).

2025-02-03 14:36:56 UTC

"Instead of sympathizing or offering concrete problem-solving advice—things that would have been helpful—he said in a disparaging tone, 'Well, when was the last time you helped someone else?'" (77).

2025-02-03 14:37:17 UTC

"If only I tried hard enough, disability would not be a problem"(77).

2025-02-03 14:37:32 UTC

"To be clear: I have chronic pain, and I would gladly wish it gone, cured, away. Yet I also cannot spend all my time pursuing cures, because I would never have a life"(76).

25do_horo — 2025-02-03 14:37:37 UTC

"I consult numerous doctors. First the emergency room, then my GP, then local specialists. Eventually I travel to other states to consult more specialists. No one knows what is causing my headache" (80).
"I take more antibiotics, against the advice of my general practictioner. I have found a specialist in chronic Lyme and he prescribes them, along with a number of expensive supplements and a special diet" (79).

2025-02-03 14:37:43 UTC

"The pain is back, and somehow it is worse than it was before, because I know what remission feels like. I had started to forget what it felt like to be in pain" (79).

2025-02-03 14:37:56 UTC

"There is a criticism of the social media of disability, located in the idea that some disabled people may not want a cure"(75).

25aroberts1 — 2025-02-03 14:38:19 UTC

"I spend many more years hating myself for not being able to overcome my disability. I regret my choice but don't know how to find acceptance for my disabled body" (78).

2025-02-03 14:38:24 UTC

" I am tired of doctors who do not listen and blame my fatness for my disability." (76)

2025-02-03 14:38:36 UTC

"Many in the Deaf and autistic communities do not want a cure and feel that those who advocate for a cure are advocating that they do not exist anymore" (76).

25dthayer — 2025-02-03 14:38:46 UTC

"I take more antibiotics, against the advice of my general practitioner. I have found a specialist in chromic Lyme and he prescrives them, along with a number of expensive supplements and a special diet. My symptoms get worse ... Shouldn't I be getting better?" (79)

25do_horo — 2025-02-03 14:38:46 UTC

"I spend many more years hating myself for not being able to overcome my disability. I regret my choice but don't know how to find acceptance for my disabled body" (78).

2025-02-03 14:38:59 UTC

"I am desperate for a cure, to regain the life I used to have when I hiked and camped and could take a full course load of classes and when reading was easy. Back when I didn't have to remember to take medications or worse yet, refill the pillboxes" (76).

25mkelleher — 2025-02-03 14:39:15 UTC

"I have so many tests. Numerous MRIs from different angles and different body parts... Anything to find out what is causing my mysterious headache" (80).

2025-02-03 14:39:20 UTC

"There is danger in the cure mentality as it can be a slippery slope toward eugenics when it is applied by abled people. Many in the deaf and autistic communities do not want a cure and feel that those who advocate for a cure are advocating that they not exist anymore" (76).

2025-02-03 14:39:24 UTC

"How do we abled people start advocating for cures? which may come in form of eliminating people entirely- rather then when the desire for a cure for disabled advocates?"(76.

2025-02-03 14:39:35 UTC

"I have found a specialist in chronic Lyme and he prescribes them, along with a number of expensive supplements and a special diet. My symptoms get worse, and I feel I am forever chasing the feeling I had on that hike...(79)"

2025-02-03 14:39:58 UTC

"I have resolved that what would heal me most is making peace with my disability, to stop warring with my body. I want acceptance" (Page 78)

2025-02-03 14:40:27 UTC

Perhaps none of this makes sense. Or perhaps it makes sense only if you live through it: the hope, the barrage of tests, the self-blame when your body still refuses to cooperate and just get better" (81).

2025-02-03 14:41:11 UTC

"The leader of our little group is a chiropractor who told me that his patients do better when they don't think of themselves as having fibromyalgia but instead think that they have pain to overcome. I am at first repulsed by this, but soon I internalize that I should not say I have fibromyalgia. It is as though saying the word is some kind of summoning charm, a curse that will birth my problems into reality" (77).

2025-02-03 14:41:29 UTC

"My friend at this time are what I would now call deeply ableist. One of them saw my shower chair and laughed and called me an old lady. The leader of out little group is a chiropractor who told me that his patients do better when they don't think of themselves as having fibromyalgia but instead think that they have pain to overcome" (77).

2025-02-03 14:41:48 UTC

"If only I wish for a cure, maybe I will have one? Certainly I wont have one without wishing. what is the harm" (78)

2025-02-03 14:44:25 UTC

"Instead of sympathizing or offering concrete problem-solving advice- things that would have been helpful- he said it in a disparaging tone, 'Well when was the last time you helped someone else?' I felt such a deep sense of shame that there were so many barriers to something as simple as volunteering." (77)