Firsthand Accounts of Living with Chronic, Invisible Illness(es)

Only a person suffering from a chronic invisible illness has any idea what that means; every day can bring new challenges. From physical pain, discomfort, fatigue, being undiagnosed or under-diagnosed, co-morbid conditions, difficulties with the medical community, difficulties with family and friends, hopes and dreams that must be abandoned or altered, trying to grieve while being thrust over and over into the grieving process when symptoms or abilities change, or when a new diagnosis is added or prognosis changed, struggles over whether to take medications, medication side-effects....The list goes on and on. Invisible chronic illness is one of the hardest challenges in life and is so under-recognized that it makes it even more difficult for those living with it on a daily basis.

This list can include books that address any invisible chronic illness, including (but not limited to): Chiari Malformation, Syringomyelia, Ehlers-Danlos Syndrome, Tethered Cord Syndrome, Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Lyme Disease, Lupus, Mixed Connective Tissue Disorder, Trigeminal Neuralgia, etc., etc., etc.

This list was designed for firsthand (patient) accounts and stories about their illnesses but may also include relevant texts from doctors, researchers, or other relevant health professionals. This list should not include "miracle-cure-type" books, such as those which suggest changing eating habits will suddenly make a person pain-free, etc. Those of us who live with chronic illness know that there is NO magic cure or we would ALL be doing it. Chances are, some have tried it and it failed. This list is meant to contain works which provide insight into the lives of others with the same/similar conditions to provide a sense of validation, camaraderie, and hope.
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Comments Showing 1-2 of 2 (2 new)

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message 2: by Chris (new)

Chris Gager I included "The Bell Jar" even though it's technically a novel it's pretty much all based on Plath's struggles with mental illness(depression, etc.). Same with "A Fan's Notes" ...


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