• Useful links
• Memoirs of coping with chronic, rare, or invisible diseases or special health problems
• Books about how to cope with chronic or invisible illnesses

---

Because I write about illness and medical research and the professionals who try to help those with medical problems, I find myself wanting to recommend links that don't really fit into the other categories on this site, or even into the concept of the site. And yet, those who come here are often grappling with the problems of chronic and/or invisible illnesses, which are not apparent to others, or rare illnesses or conditions, which are often difficult even to diagnose, much less treat. So I am going to add this category and hope that you will tell me about useful sites to link to -- so that you all can help each other. With invisible, or concealed, chronic illnesses (ICI or CCI), the kind of mutual support available directly or indirectly through the Internet is particularly important.

What are invisible illnesses? Illnesses that aren't apparent, so you expect the people who have them to be functioning normally--except they can't, because something about their illness limits them, and it may well be fatigue. Invisible chronic illnesses include anxiety and panic disorders, autism, bipolar disorder (manic depression), chronic fatigue syndrome, depression, digestive disorders such as Crohn's disease, fibromyalgia, Gulf War Syndrome, irritable bowel syndrome (IBS) lupus, migraine headaches, multiple chemical sensitivity, post-traumatic stress disorder (PTSD), rheumatoid arthritis, and various other health problems that cause multiple hospitalizations and are often characterized by waxing and waning symptoms.

It will be a while before I have time to better organize the links below. Meanwhile, I hope this is a step closer to finding what you want.

USEFUL LINKS

---

MEMOIRS OF COPING WITH
CHRONIC, RARE, OR INVISIBLE DISEASES, INCLUDING MENTAL HEALTH PROBLEMS

• Ansay, A. Manette. Limbo: A Memoir (an undiagnosed muscle disorder cuts short her career as a concert pianist)

• Barron, Judy and Sean. There's a Boy in Here (life with autism, from both mother's and son's viewpoint)

• Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in Death (immobilized by a stroke, the narrator discovers the life of the unfettered imagination)

• Bernstein,Jane. Loving Rachel (about life with a blind daughter)

• Black, Kathryn. In the Shadow of Polio: A Personal and Social History (a memoir of Black's childhood experience of a mother in an iron lung, wrapped in the larger story of the search for a cure)

• Bragg, Bernard. Lessons in Laughter: The Autobiography of a Deaf Actor

• Breslin, Jimmy.I Want to Thank My Brain for Remembering Me

• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)

• Brookes, Tim. Catching My Breath: An Asthmatic Explores His Illness

• Casey, Nell, ed. Unholy Ghost: Writers on Depression

• Casey, Nell, ed. An Uncertain Inheritance: Writers on Caring for Family (and some writers on being cared for)

• Clark, Clara Claiborne. The Seige:: The First Eight Years of an Autistic Child's Life (by the mother)

• Cohen, Richard M. Blindsided: Lifting a Life Above Illness, a Reluctant Memoir (living with multiple sclerosis and later colon cancer, and how his illness affected his wife, Meredith Vieira, and their three children)

• Cousins, Norman. Anatomy of an Illness as Perceived by the Patient (a classic take on how attitude, and especially laughter, affects health outcomes)

• DeBaggio, Thomas. Losing My Mind: An Intimate Look at Life with Alzheimer's (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness)

• Dubus, Andre. Meditations from a Movable Chair and the earlier collection of essays Broken Vessels (both written after a 1986 highway accident left him largely confined to a wheelchair, and only some essays deal with his response to the accident and his view of life from a wheelchair)

• Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth (the politics of pregnancy with a disability, in this case from polio)

• Fishman, Steve. A Bomb in the Brain: A Heroic Tale of Science, Surgery, and Survival (about surviving an aneurysm)

• Frank, Arthur W . At the Will of the Body: Reflections on Illness (explores what illness can teach us about life, drawing on his experience having a heart attack and cancer)

• Franzen, Jonathon. My Father's Brain (abstract of New Yorker story about his father and Alzheimer's disease, September 10, 2001)

• Fries, Kenny, Body, Remember (a fascinating, beautifully written memoir of creating a life and identity based not only on being "different"--in Fries' case, being gay, Jewish, and very short, because he was born with incompletely formed legs). Contains explicit sex scenes.

• Galli, Richard. Rescuing Jeffrey (an account of the gut-wrenching decisions Jeffrey's parents face in the ten days after an accident leaves him paralyzed from the neck down)

• Gordon, Barbara. I’m Dancing as Fast as I Can (on her addiction to prescription drugs)

• Gordon, Mary. Circling My Mother (Gordon's memoir of her Irish Catholic mother, deformed by polio, eventually suffering dementia — and of their complex mother-daughter relationship)

• Grandin, Temple. Emergence: Labeled Autistic (written with Margaret M. Scariano); Thinking in Pictures (the best-known of her books about growing up with autism); and Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior. Diagnosed autistic as a child, self-described as having Asperger's Syndrome more recently, Temple Grandin has probably done more than any other person to help people understand how it feels to be autistic, what "autism spectrum" means, and what special gifts and limitations autism may bring (in her case, understanding what animals need, which has created a unique professional niche for her, fascinating to read about).

• Grealy, Lucy. Autobiography of a Face (about growing up with Ewing's sarcoma, a cancer that severely disfigured her face)

• Greenberg, Michael. Hurry Down Sunshine (memoir of his daughter's first manic episode, at 15, and how her bipolar disorder affects the family)

• Haddon, Mark. The Curious Incident of the Dog in the Night-Time (a work of fiction, not memoir, but it conveys insights from author's work with autistic children)

• Havemann, Joe. A Life Shaken:My Encounter with Parkinson's Disease

• Hoffman,Richard. Half the House (about child abuse)

• Holzemer, Liz. Curveball: When Life Throws You a Brain Tumor (in her case, a baseball-sized meningioma — and remember, a brain tumor is different from brain cancer)

• Hull, John. Touching the Rock: An Experience of Blindness (from sight problems at 13, gradually becoming blind)

• Israeloff, Roberta. In Confidence: Four Years of Therapy

• Jamison, Kay Redfield. An Unquiet Mind: A Memoir of Moods and Madness

• Jezer, Marty. Stuttering: A Life Bound Up in Words

• Kaysen,Susanna. Girl, Interrupted (a young girl's experiences with mental illness)

• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)
• Kingsley, Jason, and Mitchell Levitz. Count Us In: Growing Up with Down Syndrome

• Kleege, Georgina. Sight Unseen (marginally sighted and legally blind at 11 from macular degeneration, Kleege explores the meaning and implications of blindness and sightedness, reminding us that only a fraction of blind people see nothing at all)

• Kupfer, Fern. Before and After Zachariah (about a brain-damaged child)

• Kusz, Natalie. Road Song (growing up in Alaska, being mauled by a sled-dog, undergoing reconstructive surgery)

• Kuusisto, Stephen. Eavesdropping: A Memoir of Blindness and Listening (in this sequel to Planet of the Blind, the author learns to live by ear)

• Kuusisto, Stephen. Planet of the Blind (blind in one eye and nearly blind in the other, at his mother's urging he feigns sightedness until coming to terms with his condition)

• Lachenmeyer, Nathaniel. The Outsider: A Journey into My Father's Struggle with Madness (in which the author tries to reconstruct his father's downward spiral from a promising career as a sociology professor to his death as a schizophrenic vagrant, eluding police)

• Lang, Jim. Learning Sickness: A Year with Crohn's Disease

• Lear, Martha Weinman. Heart-Sounds: The Story of Love and Loss (heart disease)

• Lewis, Mindy. Life Inside (diagnosed as schizophrenic at 15, kept in a psychiatric hospital till 18, recovering for decades, believing she was never schizophrenic)

• Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled (wheelchair-bound from advancing multiple sclerosis, she offers "a Baedeker for a country to which no one travels willingly").

• Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism

• McDonnell, Jane Taylor. News from the Border: A Mother's Memoir of Her Autistic Son

• McLean, Richard. Recovered, Not Cured: A Journey Through Schizophrenia (a brief, readable memoir by a gay Australian artist whose drawings vividly illustrate the story he tells about his life and mind with schizophrenia)

• Monette, Paul. Borrowed Time, Becoming a Man, and Last Watch of the Night (a gay man battles AIDS)

• Neugeboren, Jay. Imagining Robert: My Brother, Madness, and Survival: A Memoir (his brother's 30-year struggle with mental illness)

• Neugeboren, Jay. Open Heart: A Patient's Story of Life-Saving Medicine and Life-Giving Friendship

• Phillips, Jane. The Magic Daughter: A Memoir of Living with Multiple Personality Disorder

• Rhett, Kathryn, ed. Survival Stories: Memoirs of Crisis

• Richmond, Lewis. Healing Lazarus: A Buddhist’s Journey from Near Death to New Life (viral encephalitis sends him into coma, and in recovery he experiences an acute neuropsychiatric complication from a therapeutic drug)

• Robinson, Jill. Past Forgetting: My Memory Lost and Found ( a compelling account of severe memory loss as the result of a seizure, by a fine novelist who grew up in Hollywood , as daughter of writer and film executive Dore Schary)

• Robison, John Elder. Look Me in the Eye: My Life with Asperger's (an interesting book made more so by the fact that he is the brother of Augusten Burroughs, author of Running with Scissors, and tells from a different angle some of the same stories from their bizarre childhood)

• Roth, Philip. Patrimony (about a father's illness and about the father-son relationship)

• Rothenberg, Laura. Breathing for a Living (making the most of life with cystic fibrosis that takes her life at 22)

• Saks, Elyn. The Center Cannot Hold: My Journey Through Madness (a fascinating memoir of the internal chaos and external unfairness that have made a life with schizophrenia so difficult for this professor of law and psychiatry, and of the talk therapy—indeed, psychoanalysis—she felt was as important as medication in helping her live a high-functioning life as a professor of law and psychiatry)

• Sarton, May. After the Stroke (the poet's journal about recovering from a mild stroke when she is in her seventies)

• Scheff, David. Beautiful Boy: A Father's Journey Through His Son's Addiction (chronicling a precocious teenager's spiral downward from abuse of mind- and mood-altering drugs to meth addiction)

• Scheff, Nic. Tweak: Growing Up on Methamphetamines (the son's story, companion book to Beautiful Boy)

• Schreber, Daniel Paul. Memoirs of My Nervous Illness (memoirs of madness, as recalled a century ago during confinement In a German mental asylum)

• Shawn, Allen. Wish I Could Be There: Notes from a Phobic Life — part memoir, part explanation, a beautifully written and fascinating account of Shawn's own anxiety and agoraphobia, and a fine summary of what is known about how we form and can learn to manage anxiety and phobias.

• Shields, David. The Thing About Life Is That One Day You'll Be Dead (personal history melds with riveting biological info about the body at every stage of life — an "autobiography of the body")

• Shreve, Susan Richards. Warm Springs: Traces of a Childhood at FDR's Polio Haven (an "indelible portrait of the psychic fallout of childhood illness").

• Sidransky, Ruth. In Silence: Growing Up Hearing in a Deaf World

• Sienkiewicz-Mercer, Ruth and Steven B. Kaplan. I Raise My Eyes to Say Yes. (Encephalitis at 5 weeks left Ruth, a healthy baby, paralyzed and unable to speak normally. Diagnosed an imbecile at 5 years, she was eventually institutionalized and severely mistreated at a school for the mentally and physically disabled until a staff turnover brought her help, including a method for communicating.)

• Skloot, Floyd. The Night-Side: Chronic Fatigue Syndrome and the Illness Experience (an account of how a mysterious and life-altering illness struck overnight, dramatically changing Skloot's life, and how he dealt with it); a later memoir, In the Shadow of Memory, contains essays about Skloot's experience of losing his memory after being infected by a virus and struggling to regain lost memories.

• Solomon, Andrew. Noonday Demon: An Atlas of Depression

• Spradley, Thomas S. and James P. Deaf Like Me (parents of a child born deaf as the result of an epidemic of German measles waste years avoiding sign language before learning how to communicate with their child)

• Steinem, Gloria. "Ruth's Song, Because She Could Not Sing It," in Outrageous Acts and Everyday Rebellions (about childhood with a mentally ill mother)

• Styron, William. Darkness Visible (about his struggle with crippling depression)

• Sutcliff, Rosemary. Blue Remembered Hills: A Recollection (the memoir of one of Britain’s best-loved historical novelists, crippled and badly disabled from the age of three by Still’s Disease, a form of juvenile arthritis)

• Tammet, Daniel. Born on a Blue Day (memoir of a life with synaesthesia and savant syndrome, a rare form of Asperger's syndrome)

• Taylor, Jill Bolte. My Stroke of Insight: A Brain Scientist's Personal Journey (a story that provides hope for the brain-injured, not just those who have had a stroke, as this young brain scientist did)

• Walker, Lou Ann. A Loss for Words: The Story of Deafness in a Family

• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)

• Wexler, Alice. Mapping Fate: A Memoir of Family, Risk, and Genetic Research (on Huntington's Disease)

• Wilensky, Amy S. Passing for Normal (a compelling account of life with a long-delayed diagnosis of Tourette's syndrome and obsessive-compulsive disorder — and an "exploration of the larger themes of difference and the need to belong")

• Willey, Liane Holliday. Pretending to Be Normal: Living with Asperger's Syndrome (a mother's account of her own and her daughter's life with Asperger's syndrome)

• Williams, Donna. Nobody Nowhere (growing up as an autistic child, and a far different story from others listed here)

• Wurtzel, Elizabeth. Prozac Nation: Young and Depressed in America (atypical depression and bouts with drugs)

---

[Go Top]

BOOKS ABOUT HOW TO COPE WITH CHRONIC OR INVISIBLE ILLNESSES
• Donague, Paul H., and Mary Elizabeth Siegel. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness
• Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
• Hartwell, Lori. Chronically Happy: Joyful Living In Spite Of Chronic Illness
• Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome
• Sveilich, Carol. Just Fine: Unmasking Concealed Chronic Illness And Pain
• Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers, and Providers
• Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Milstrey’s problems: Sjögren's syndrome (an autoimmune disease that dries the eyes and mouth), fibromyalgia (a painful muscle disorder), and interstitial cystitis (a chronic inflammation of the bladder).

---

Suicide Help Online
http://www.hopeline.com
http://www.spanusa.org

Suicide Hotlines
1-888-649-1366
1-800-SUICIDE
1-800-784-2433

"He began to collect vintage jazz records and in no time knew all the musicians and the groups they had played with. But this time he didn't 'display' his knowledge the way he always had before, the way, I'd read, most autistic kids did as a substitute for real conversation."
~ Judy Barron, writing about her son Sean's emergence from autism in There's a Boy in There, a fascinating account of a boy's childhood with autism, told by both mother and son

"The McCain plan could consequently trigger a move from comprehensive insurance toward thinner coverage policies that shift costs onto sicker patients."
~ Jonathan Oberlander in New England Journal of Medicine

"Many people with Asperger's have an affinity for machines. Sometimes I think I can relate better to a good machine than any kind of person. I've thought about why that is, and I've come up with a few ideas. One thought is that I control the machines. We don't interact as individuals. No matter how big the machine, I am in charge. Machines don't talk ack. They are predictable. They don't trick me, and they're never mean.
"I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they're mad, or they're just waiting for me to say something. I don't have problems like that with machines."
~ John Elder Robison, in Look Me In the Eye: My Life with Asperger's, p. 151

"In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures."
~Susan Wendell, “Toward a Feminist Theory of Disability”

"Students who struggle with illnesses that unpredictably increase and decrease in severity such as asthma, chronic fatigue syndrome, lupus, rheumatoid arthritis, or illnesses with frequent hospitalizations such as cancer or heart disease, may have found it difficult, if not impossible, to meet the requirements of a conventional college program....A chronic illness is one that typically involves waxing and waning symptoms that interfere with the student’s ability to physically engage successfully in a college program."

~ The Chronic Illness Initiative

“Although telling someone they look good is often seen as a compliment,it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
~Lisa Copen, founder of National Invisible Chronic Illness Awareness Week,

"Within a month of signing my appointment papers to become an assistant professor of psychiatry at the University of California at Los Angeles, I was well on my way to madness. Within three months, I was manic beyond recognition. And just beginning a long, costly, personal war against medication that I would in a few years time be strongly encouraging others to take.

"My illness and my struggle against the drug that ultimately saved my life and restored my sanity had been years in the making. For as long as I can remember, I was frighteningly although often wonderfully beholden to moods. Intensely emotional as a child, mercurial as a young girl, first severely depressed as an adolescent and then unrelentingly caught up in the cycles of manic-depression by the time I began my professional life. I became both by necessity and intellectual inclination a student of moods. It has been the only way I know to understand and indeed to accept the illness I have. It has also been the only way I know to try to make a difference in the lives of others who also suffer from mental illness."
Kay R. Jamison, PhD, An Unquiet Mind: Personal Reflections on Manic-Depressive Illness "