• Helpful websites and other resources
• Managing pain
• Memoirs of coping with chronic, rare, or invisible diseases or special health problems
• Books about how to cope with chronic or invisible illnesses

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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.

Helpful websites and other resources

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ADHD, ADD, and other problems with inconsistent (sometimes hyperfocused) attention:
• Listen or read (NPR, Tell Me More): Tackling Motherhood...And ADHD. As more children are diagnosed with Attention Deficit Hyperactivity Disorder, parents are discovering they have it too. In the U.S., women have become the fastest growing group to be prescribed ADHD medication. In this parenting segment, host Michel Martin speaks with Jennifer Brown and Michelle Suppers — "moms with ADHD" and journalist Brigid Schulte, who wrote about the issue for the Washington Post Magazine.
• Listen or read (NPR, Tell Me More): Listeners Relate To Moms Juggling Kids And ADHD. Michel Martin and NPR's Tanya Ballard Brown comb through listener feedback to conversations on Tell Me More's segments about "enhanced interrogation techniques" and parents who manage Attention Deficit Hyperactivity Disorder
• Listen or Read (NPR): Dealing with ADHD as an Adult (Neal Conan, Talk of the Nation, and guests Robert Jergen, Edward Hallowell, and Patricia Quinn)
• Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood by Edward M. Hallowell and John J. Ratey (or, for those who have trouble reading, the small-byte-sized Answers to Distraction. Both available as books on tape. Read an excerpt from their book Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder. The authors, both professionals, also have ADD.
• The Little Monster: Growing Up With ADHD by Robert Jergen. (Read the preface)
• One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD by Bryan L. Hutchinson
• ADHD Affects Women Differently: What to Look For, How to Fix It (Health.com)
• Is It Really ADHD? Other Conditions with Similar Symptoms

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After Surgery to Slim Down, the Bills Can Pile Up (Lesley Alderman, NYTimes, 12-31-10). After bariatric surgery, high co-payments, nutritional and behavioral counseling and cosmetic surgery can easily add up to thousands of dollars, mostly out of patients’ pockets.

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Alzheimer's (see also dementia and dementia care)
• Alzheimer's Association
• Alzheimer Research Forum (AlzForum)
• Camp For Alzheimer's Patients Isn't About Memories (read or listen to Deborah Franklin, NPR, 9-6-10)
• Camps for Caring (Family Caregiver Alliance)
• Best Friends Approach
• Validation Training Institute (to learn a method for communicating with very old people who are diagnosed with dementia)
• Tracing the Path from DNA to Dementia (Irene Wielawski, NY Times)
• How Exercise Might Help Keep Alzheimer's At Bay (read or listen to Jon Hamilton, NPR 4-29-10)
• Mental Stimulation Postpones, Then Speeds Dementia (read or listen to Allison Aubrey, NPR, 9-4-10)
• Evidence Lacking To Support Alzheimer's Prevention (read or listen to Rose Raymond, NPR 4-28-10)
• Remembered: The Alzheimer's Photography Project (for people with Alzheimer's the past becomes part of the present -- it inserts itself and becomes part of their lives -- Gregg Segal, for AARP)
• Music Can Help Families Living With Alzheimer's (Jess Ludwig, AARP, 12-21-10)
• Beyond Forgetting: Poetry and Prose about Alzheimer's Disease
• Losing My Mind: An Intimate Look at Life with Alzheimer's by Thomas DeBaggio (the early memories and the daily struggle of a man coming to terms with a progressively debilitating illness)
• Alzheimer's tests using pen and paper still the best (Shari Roan, Los Angeles Times, Booster Shots blog 9-6-11)
• The Johns Hopkins Guide to Understanding Dementia (free, after you sign up)
• Keeper: One House, Three Generations, and a Journey into Alzheimer's by Andrea Gillies (reviewed in the NY Times by Paula Span).
• Path Is Found for the Spread of Alzheimer’s (Gina Kolata, NY Times, 2-1-12). Two studies in mice show Alzheimer's disease spreading from brain cell to brain cell through a distorted protein called tau. "The question of which hypothesis was correct — tau spreading cell to cell, or a bad neighborhood in the brain and cells with different vulnerabilities to it — remained unanswerable."
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Androgen Insensitivity Syndrome Support Group (AISSG) (UK). Information and support for XY women, including links to related sites.

Antipsychotic Drugs: Side Effects May Include Lawsuits. Duff Wilson, NY Times, 10-2-10, writes that the second-generation ("atypical") antipsychotic drugs, which pharmaceutical companies marketed heavily as being safer, are the subject of lawsuits, unveiling documents revealing questionable marketing tactics about drugs for which side effects are still being reviewed.

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Autism spectrum disorders
• A Parent’s Guide to Autism Spectrum Disorder (National Institute of Mental Health
• Autism blog (Psychology Today)
• Autism Society of America (ASA)
• WrongPlanet.net (Web community and resource for individuals, and parents of those, with Asperger's Syndrome, autism, ADHD, and other PDDs). See WrongPlanet video interviews, etc. on YouTube and Autism Talk TV
• Aspergian Pride (extensive links to resource and advocacy sites, including sites promoting neurodiversity as the next civil rights issue)
• Navigating Love and Autism (Amy Harmon, New York Times, Autism Grown Up, Love on the Spectrum, 12-26-11). The moving and enlightening love story of Jack Robison and Kirsten Lindsmith, both of whom fall on the autism spectrum. "Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as 'mindblindness' — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships."
• Genius locus: Autism and extraordinary ability (The Economist 4-16-09). There is strong evidence for a link between genius and autism. In the first of three articles about the brain, the Economist asks how that link works, and whether “neurotypicals” can benefit from the knowledge
• A Family's Guide to Community-Based Instruction for Students with Disabilities (New Jersey Dept of Education)
• Not more, just different (The Economist 4-10-08). An explanation for the increasing incidence of autism
• A cry for help: Why some children with autism suffer in mainstream schools (The Economist 5-25-06)
• Autistic and Seeking a Place in an Adult World (Amy Harmon, New YorkTimes 9-17-11).
• Are we autistic people shaping the public's view of autism in ways harmful to our cause? by John Elder Robison, author of Look Me in the Eye: My Life with Asperger's
• Article linking autism to vaccination was fraudulent. Fiona Godlee, editor in chief, Jane Smith, deputy editor, and Harvey Marcovitch, associate editor, British Medical Journal 5 Jan 2011. A 1998 Lancet paper, chiefly by Andrew Wakefield, implied a link between the measles, mumps, and rubella (MMR) vaccine and a “new syndrome” of autism and bowel disease. Clear evidence of falsification of data in that article should now close the door on this damaging vaccine scare, write BMJ's top editors. In a seven-part series, journalist Brian Deer shows the extent of Wakefield's fraud and how it was perpetrated: How the case against the MMR vaccine was fixed

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The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)

Center for Medical Consumers (working to protect patients' rights--helping them make informed decisions). "Are all those drugs and tests you're told you need really critical to your health? The only way to answer this question is to read the published studies yourself. We do it for you each month. Our articles provide a critical evaluation of the latest medical research you’re not likely to get from your doctor.

Chronic fatigue syndrome. Don't wait for a cure to appear. "I had to change my life to get relief," writes Zachary Sklar (WashPost 10-27-09)."I had to take responsibility for changing the habits, the diet, the life patterns that contributed to my getting sick in the first place."

Chronic Mom says "Hope is catching." A blog for parents of children with chronic health issues, by a mother of two children who have cystic fibrosis.

Coping With Crises Close to Someone Else's Heart (Harriet Brown, NYTimes 8-16-10), essay on why some people distance themselves from those suffering a crisis or offer "pseudo-care" instead of real help)

Dementia Care Central (dealing with various forms of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, and fronttemporal dementia or FTD)

Dementia, non-Alzheimer's. "FTD or frontotemporal dementia is the leading cause of dementia in middle age. It strikes at a younger age than Alzheimer΄s. Cases have been seen as early as 21 and as late as 80, but the disease typically hits during the 40s, 50s and 60s – when children are still in the home." ~ from excellent site of the University of California, San Francisco. Especially helpful explanations of Forms of Frontotemporal Dementia: Behavioral variant FTD, semantic dementia, progressive nonfluent aphasia, and FTD with motor neuron disease. One of the most complete (yet succinct) explanations can be found in a free PDF publication from the National Institute on Aging: Frontotemporal Disorders: Information for Patients, Families, and Caregivers. It discusses frontotemporal dementia, primary progressive aphasia, and movement disorders--brain disorders that affect personality, behavior, language, and movement. It includes these links to useful resources. Jane Brody wrote a story about primary progessive aphasia (P.P.A.):A Thief That Robs the Brain of Language (NY times, 5-2-11).

Rachel Hadas, who "lost" her husband to FTD, writes about how his decline changed their lives in her memoir Strange Relation: A Memoir of Marriage, Dementia, and Poetry, spotlighted on NBCC's Critical Mass. She speaks about her husband's illness in an interview on NPR's Talk of the Nation (Spouse's Dementia Leaves Poet A 'Strange Relation'). Hadas recommends The Association for Frontotemporal Degeneration (AFTD) and the Well Spouse Association (support groups for spousal caregivers). Here's her poem, “In the Taxi to the MRI.”

Diabetes:
• American Diabetes Association (ADA)
• Advice for Newbies (David Mendosa)
• Diabetes Online Community (DOC)
• Diabetes Directory (David Mendosa's comprehensive site) and Online Diabetes Resources (also Mendosa's)
• DiabetesWorld (a Yahoo discussion list for people with Diabetes Mellitus to with Diabetes Mellitus to exchange ideas about the disease, its treatment, diet, blood glucose monitoring, and improving the quality of life)
• The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed by Gretchen Becker
• MyDiabetesCentral on HealthCentral (online resources for people with various health problems)
• National Diabetes Information Clearinghouse (NDIC) (NIDDK)
• Top 10 Resources for Information About Diabetes (David Mendosa)
• Wildly Fluctuating, musings on diabetes news of the week by Gretchen Becker, a Type 2 diabetes patient-expert, and Gretchen Becker's share posts on MyDiabetesCentral.com, the diabetes section of HealthCentral.com

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Diabulimia: All in Our Heads? (Amy T, DiabetesMine, 10-28-10). In 2007, journalists began writing about diabulimia (women with type 1 diabetes, who were shunning their medication for fear of getting fat-- or restricts or stopping taking their insulin to lose weight). See articles by expert Ann Goebel-Fabbri, at the Joslin Diabetes Center. There is a new book by Maryjeanne Hunt about battling this eating disorder: Eating to Lose: Healing from a Life of Diabulimia, which is reviewed here.

Family Health History Resources (Genetic Alliance's helpful links to resources)

Family to Family Education Program. The NAMI Family-to-Family Education Program is a free, 12-week course for family caregivers of individuals with severe mental illness. (National Alliance on Mental Illness)

Fanconi Anemia: A Handbook for Families and Their Physicians by Lynn and Dave Frohnmayer (available free, online, in PDF format)

Genetic Alliance, a nonprofit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders, whose network of groups includes more than 1,000 disease-specific advocacy organizations (including some focused on intersexed conditions) as well as universities, private companies, federal agencies, policy groups, and private citizens working to promote genetic research.

The Good Short Life by Dudley Clendinen (NYTimes, 7-9-11). Living with Lou Gehrig's disease is about life, when you know there's not much left. And Writer Dudley Clendinen has chosen not to go to the great expense and limited potential of extending his life--but to enjoy what he can of it, while he can. He learned he had the disease when he was 66, and Maryland Morning, an NPR news station, has been airing conversations with him about how he and his daughter Whitney have been dealing with the disease and its implications. Listen to the podcasts

**HealthCentral has sites (and blogs) in these categories: Acid Reflux, ADHD, Allergy, Alzheimer's, Anxiety, Arthritis, Asthma, Bipolar, Blood Pressure,Breast Cancer,Cholesterol, Chronic Pain,Cold and Flu, COPD, Depression, Diabetes, Diabetes and Teens, Diet and Exercise, Erectile Dysfunction, Food and Nutrition, Heart Disease, Herpes, HIV/​AIDS, IBD, Incontinence, Learning Disabilities, Menopause, Migraine, Multiple Sclerosis, Obesity, Osteoporosis, Prostate, Rheumatoid Arthritis, Schizophrenia, Sexual Health, Skin Cancer, Skin Care, Sleep, Wellsphere. This looks like a good place to start finding out about a health problem.
Check out HealthCentral's Video Library. The videos I sampled (from a large, searchable, well-organized collection), looked very helpful, especially for those new to a condition. The videos come from various sources.

L'Arche ("relationship, transformation")--L’Arche faith-based communities are family-like homes where people with and without disabilities share their lives together.

Mental Illness in Academe Elyn R. Saks on the day an incident of paranoid schizophrenia came on while she was teaching a class--and when and whether to "come out" about your mental illness (Chronicle of Higher Education, 11-25-09). Read her memoir, The Center Cannot Hold: My Journey Through Madness

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Migraine
• Biofeedback: A High-Tech Weapon Against Migraines by Sue Russell (HealthyMagination 7-18-11)
• National Migraine Association (MAGNUM). See also the story Finding Good Migraine Care a Headache for the Uninsured (Amanda Gardner, BusinessWeek 4-12-10)
• An Exploration Of 'The Migraine Brain' (Terry Gross, Fresh Air, WHYY, 11-4-08, interviews Carolyn Bernstein, author of The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health
• Migraine Chick (Deborah Leigh's blog, and she has a bloglist of others writing on the topic)
• Migraine Cast weekly podcast, (Teri Robert, patent advocate)
• Migraine Research Foundation
• Migraine Quiz, excerpted from The Women's Migraine Survival Guide by Christina Peterson and Christine Adamec (on Migraine Survival site
• Patient Voices: Migraine (NY Times Health Guide)
Migraine, books about:
• Breaking the Headache Cycle: A Proven Program for Treating and Preventing Recurring Headaches by Ian Livingston and Donna Novak
• Living Well with Migraine Disease and Headaches: What Your Doctor Doesn't Tell You...That You Need to Know by Teri Robert
• The Migraine Brain: Your Breakthrough Guide to Fewer Headaches, Better Health a book by Carolyn Bernstein and Elaine McArdle
• Migraine Expressions: A Creative Journey Through Life With Migraine by Betsy Baxter Blondin
• Validate Your Pain! Exposing the Chronic Pain Cover-Up by Allan Chino and Corinne Dille Davis
• What's Triggering Your Migraine? (Allison Aubrey, Morning Edition, NPR 4-27-06)
• Q & A: Your Questions on Migraine (Vikki Valentine, NPR, with David Buchholz, co-author with Stephen Reich of Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain. It's allergy season and your head is pounding, what do you take? Tylenol Sinus, Advil or Imitrex? And what's a vegan with migraine to do?
• Migraine Treatment, Prevention in Black Women. Pam oliver talks with Farai Chideya (NPR, 2-28-08) about what causes painful headaches and what can be done to help. African Americans tend to report higher levels of headache pain but are less likely to get treatment.
• The Woman's Migraine Toolkit: Managing Your Headaches from Puberty to Menopause by Dawn A.Marcus and Philip A. Bain
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Mindfulness meditation offers help with the travails of chronic illness (The Conversation, 6-10-11). A mindfulness-based stress reduction (MBSR) program originally used for managing chronic pain and stress-related disordershas since helped people with cancer, chronic pain, stress, anxiety, depression, fibromyalgia, psoriasis, disordered eating and other conditions.

Months to Live: Fighting for a Last Chance at Life (Amy Harmon, NY Times 5-16-09, on ALS patient Joshua Thompson's struggle to get access to an experimental drug whose safety and efficacy had not been tested, but which might slow the progressive paralysis that comes with ALS).

NIH Research. CRISP replaced by NIH RePORTer (NIH Research Portfolio Online Reporting), a searchable database on federally funded biomedical research projects and programs. News updates here.

Parkinson's.
• A healthy state of denial (Michael Kinsley, Guardian 12-13-01). Eminent American writer Michael Kinsley explains why he has spent the past eight years pretending not to have Parkinson's
• Mine Is Longer than Yours. Michael Kinsley (The New Yorker, 4-7-08). A diagnosis of Parkinson's disease forces Kinsley to reflect on mortality earlier than his peers; in this piece, he examines longevity as the last competitive game among baby boomers.

Patient Voices, a NY Times series of first-person accounts (in audio) of living with various chronic diseases, including A.D.H.D.,
AIDS and H.I.V., A.L.S. (Lou Gehrig's disease), bipolar disorder, Eating Disorders, Epilepsy. Check out the whole list.

PTSD. National Center for PTSD (informative U.S. Dept of Veterans Affairs website--click on "Search PILOTS" to find published articles on various aspects of post-traumatic stress disorder). Download Psychological First Aid: Field Operations Guide (an evidence-informed modular approach for helping people immediately after a disaster or terrorism).

Pulse: voices from the heart of medicine (personal accounts of illness and healing, fostering the humanistic practice of medicine, encouraging health care advocacy). See Pulse's archive of poems and stories.

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Sleep apnea
This is a surprisingly common problem, which robs you of energy. Snore loudly? Pause for breath during night? Awaken tired? Get tested. Here are some helpful links.
• American Sleep Apnea Association
• ASAA forum (discussion board)
• CPAP devices
• Provent (a new device, less cumbersome than a CPAP machine)
Some books that may be helpful:
• Questions & Answers About Sleep Apnea by Sudhansu Chokroverty
• Sleep Apnea-The Phantom of the Night: Overcome Sleep Apnea Syndrome and Win Your Hidden Struggle to Breathe, Sleep, and Live by T. Scott Johnson
• Restless Nights: Understanding Snoring and Sleep Apnea by Peretz Lavie
• Sleep, Interrupted: A physician reveals the #1 reason why so many of us are sick and tired by Steven Y. Park
• Sleep Apnea and CPAP - A User's Manual By a User by Bruce Stein
• Snore No More by James L. Mosley

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Stroke. Jill Bolte Taylor's stroke of insight. Fascinating, informative, inspirational TED talk (on video), partly about how the brain works. Taylor (whose brother has schizophrenia) got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one.

WE MOVE, Worldwide Education and Awareness for Movement Disorders, has useful information pages about ataxia, bradykinesia, chorea and choreoathetosis, corticobasal degeneration, dyskinesias (paroxysmal), dystonia, essential tremor, hereditary spastic paraplegia, Huntington's disease, multiple system atrophy, myoclonus, Parkinson's disease, progressive supranuclear palsy, restless legs syndrome, Rett syndrome, spasticity, Sydenham's chorea (St. Vitus' dance), tics, Tourette's sydrome, tremor, and Wilson disease.

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PAIN MANAGEMENT
• American Academy of Pain Management
• American Academy of Pain Medicine
• American Chronic Pain Association. Resources include a list of conditions characterized by pain and A Consumer Guide to Pain Medication and Treatment
• American Fibromyalgia Syndrome Association (AFSA)
• American Pain Foundation (which has absorbed the National Pain Foundation)
• Biofeedback: A High-Tech Weapon Against Migraines (Sue Russell, Healthymagination 7-18-11)
• Chronic Lyme and other tick-born diseases ("When the doctor gets sick, the journey is double-edged," by Pamela Weintraub, Psychology Today, in 3 parts)
• Dancing with Pain (one approach to pain relief)
• For Grace. Resources for Women in Pain.
• How to Cope with Pain website (breathing and relaxation exercises, guided imagery,etc.--includes favorite how-to-cope-with-pain submissions
• Pain Relief Network (where chronic pain patients, doctors, and supporters can be heard)
• Partners Again Pain (addressing untreated and undertreated pain in America)
• Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), promotes public and professional awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD)

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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)

• Beasley, Sandra. Don't Kill the Birthday Girl: Tales from an Allergic Life. Beasley's allergies —severe and lifelong—include dairy, egg, soy, beef, shrimp, pine nuts, cucumbers, cantaloupe, honeydew, mango, macadamias, pistachios, cashews, swordfish, and mustard--and that's just the food allergies. A memoir with explanations, for any family dealing with allergies.

• 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

• Brown, Harriet. Brave Girl Eating: A Family's Struggle with Anorexia (by the author of Feed Me!: Writers Dish About Food, Eating, Weight, and Body Image)

• Brown, Ian. The Boy in the Moon: A Father's Search for His Disabled Son. Memoir of Brown's relationship with his son, Walker, born with a rare genetic disorder that leaves him profoundly developmentally disabled. Not yet for sale in USA; available through Amazon Canada (based on Brown's excellent illustrated series, The Boy in the Moon in Canada’s Globe & Mail).

• Callahan, John.Will the Real John Callahan Please Stand Up?: A Quasi-Memoir. Paralyzed from the neck down after an automobile accident when he was 21, Callahan became "America's most offensive quadriplegic cartoonist," making fun of disability, among other things.

• 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)

• Cohen, Leah Hager. Train Go Sorry: Inside a Deaf World. The hearing grandchild of deaf immigrants, Cohen (a sign-language interpreter whose father headed the Lexington School for the Deaf in Manhattan) traces the lives of a Russian immigrant (learning a second and third language, English and American sign language or ASL) and a boy raised in an urban ghetto, to explore the world and issues of deafness: debates over ASL, oralism, mainstreaming, cochlear implants (which some contend rob the deaf of their culture). ("Train go sorry" means "you missed the boat.")

• 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). Cohen also wrote Strong at the Broken Places (stories about five "citizens of sickness," individuals with ALS, non-Hodgkin's lymphoma, Crohn's disease, muscular dystrophy, and bipolar disorder).

• Costello, Victoria. A Lethal Inheritance: A Mother Uncovers the Science Behind Three Generations of Mental Illness ) (partly about her sons' depression and schizophrenia). See her essay: The Implications of plot lines in narrative and memoir.

• 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)

• Dendy, Chris A. Zeigler and Alex Zeigler. A Bird's-Eye View of Life with ADD and ADHD: Advice from young survivors (for children and teenagers with the disorder)

• 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

• Ellison, Katherine. Buzz: A Year of Paying Attention , captured partly in her Washington Post article, For ADHD, lots of snake oil, but no miracle cure
• Felstiner, Mary. Out of Joint: A Private and Public Story of Arthritis (life with rheumatoid arthritis as experienced and studied by a feminist and historian).

• Finger, Anne. Past Due: A Story of Disability, Pregnancy, and Birth (the politics of pregnancy with a disability, brought to life -- in this case from a woman whose childhood was made more difficult by surviving both polio and an abusive father). For more about the illness that left her disabled, read her Elegy for a Disease: A Personal and Cultural History of Polio

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

• Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist. Listen to the audiobook of this book by the actor-turned-philosophical-optimist about what can be taken from you (in his case, with Parkinson's disease, a neurological degenerative disease that takes away easy control of movement) and what cannot.

• 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)

• Gillies, Andrea. Keeper: One House, Three Generations, and a Journey into Alzheimer's (reviewed in the NY Times by Paula Span).

• 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)

• Gottlieb, Daniel.Learning from the Heart: Lessons on Living, Loving, and Listening. A family therapist with a radio call-in show, a newspaper columnist made quadriplegic by an accident decades ago, and author of Letters to Sam: A Grandfather's Lessons on Love, Loss, and the Gifts of Life (his autistic grandson -- a special-needs grandfather provides insights for his special-needs grandson)), Gottlieb urges self-acceptance as the road to happiness, not changing themselves or their circumstances.

• 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).

• Grant, Linda. Remind Me Who I Am, Again. About how her mother's vascular dementia (brought on by small strokes) exacerbates Grant's troubled relationship with the woman.

• 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)

• Hadas, Rachel. Strange Relation: A Memoir of Marriage, Dementia, and Poetry. Hadas's memoir of "losing" her husband to frontotemporal dementia.

• 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

• Hoblitzelle, Olivia Ames. The Majesty of Your Loving; A Couple's Journey Through Alzheimer's. Practical and spiritual wisdom about facing (together) a disease that changes who a person is or seems to be.

• Hockenberry, John. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. An NPR journalist left paraplegic after a 1976 car accident writes about living life from a wheelchair--and about cultural differences in how people in various countries treat people with disabilities

• 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)

• Hornbacher, Marya. Madness: A Bipolar Life. Hornbacher's memoir of her life with rapid cycling type 1 bipolar disorder, starting as a toddler when she couldn't sleep at night.

• Hornbacher, Marya.Wasted: A Memoir of Anorexia and Bulimia . Written at 23 for young adults, this brutally candid memoir may "trigger" those still in grips or early stages of disease, say some readers, serving as a how-to guide for eating disorders. Good insight for families of those with ED.

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

• Hutchinson, Bryan L. One Boy's Struggle: A Memoir: Surviving Life with Undiagnosed ADD

• 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

• Johnson, Harriet McBryde. Too Late to Die Young: Nearly True Tales from a Life Born with a congenital neuromuscular disease, Johnson wants kids with disabilities to grow up "prepared to survive," not merely waiting to die, so she annually joined protestors against the Jerry Lewis muscular dystrophy telethon. (Read her story Unspeakable Conversations, her 2003 New York Times Magazine article about her conversations with Princeton professor Peter Singer about his beliefs that it might be better to kill some babies that might end up severely disabled, like her.

• 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

• Kisor, Henry. What's That Pig Outdoors?: A Memoir of Deafness. Kisor, who lost his hearing at the age of three after a bout of meningitis, lipreads, does not sign, and never entered the subculture of the deaf. He writes of the problems a deaf person has learning to think in language, and with humor describes his life growing up in a hearing world -- the only deaf student at Trinity College, a graduate student at Northwestern, and book review editor for major newspapers.

• 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)

• Kriegel, Leonard. Flying Solo: Reimagining Manhood, Courage, and Loss. Kriegel came of age in the 1940s and 1950s, when childhood polio left him without the use of his legs. "In this unflinching yet lyrical memoir, Kriegel exalts an American mythic vision of mid-20th-century machismo. . . . Never pulling a punch, the would-have-been Bronx street fighter extols the manly virtues of anger, revenge and rage against the fates."--Publishers Weekly

• Krieger, Susan. Things No Longer There: A Memoir of Losing Sight and Finding Vision. "Even before Krieger began losing her vision to a rare condition known as birdshot retinochoroidopathy, she had become fascinated by the idea that nothing remains as we recall it," wrote a Booklist reviewer.

• 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)

• Laborit, Emmanuelle. The Cry of the Gull. What it was like to grow up deaf in France, where sign language was banned as too sensual until 1976, well into Laborit's childhood; what it's like to communicate with others if you can't hear them; and how learning sign language made her life easier. (Read this is your child or student is deaf.)

• 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)

• Levy, Andrew. A Brain Wider Than the Sky: A Migraine Diary ("part memoir, part historical inquiry, part philosophical meditation")

• Lewis, Cathleen.Rex: A Mother, Her Autistic Child, and the Music that Transformed Their Lives (the moving story of a mother and her child, a boy who is blind, autistic, and a musical savant)

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

• Linton, Simi. My Body Politic: A Memoir . Carol Tavris (author of Anger: The Misunderstood Emotion ) wrote of Linton's memoir: "Witty, original, and political without being politically correct, introducing us to a cast of funny, brave, remarkable characters (including the professional dancer with one leg) who have changed the way that 'walkies' understand disability. By the time Linton tells you about the first time she was dancing in her wheelchair, you will feel like dancing, too."

• 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").

• Manguso, Sarah. The Two Kinds of Decay. A poet's memoir of the rare autoimmune disease called CIDP, which would turn her body against itself, interrupting her life in prolonged illness. "In simple, unsentimental language, she describes her initial symptoms, her sudden attacks, her treatments, her suicidal depression, and her progress as a patient and, incidentally, as a person," wrote a Boston Globe reviewer

• 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

• McKee, Steve. My Father’s Heart: A Son’s Journey (a tender memoir about suburban life in York, PA and Buffalo, NY -- in the 1960s, in every sense a “family history,” shedding light on heart disease, especially as inherited in families). Check out Steve McKee’s blog , too.

• 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)

• Monks, Millicent. Songs of Three Islands: A Story of Mental Illness in an Iconic American Family. A memoir of the Carnegie family, also written about by Lisa Belkin in the Times story, One Family and Its Legacy of Pain (8-11-10)

• 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

• Nixon, Shelley. From Where I Sit: Making My Way with Cerebral Palsy

• Ototake, Hirotada. No One's Perfect . Born with no arms or legs, Ototake participated in school athletics and became an activist for disability rights in Japan, a country that traditionally hid the disabled from public view. An inspiring memoir that became a bestseller in Japan.

• Park, Clara Claiborne. The Siege: A Family's Journey Into the World of an Autistic Child (the First Eight Years of an Autistic Child's Life by the mother)

• Peterson, Alice. Another Alice. Peterson got rheumatoid arthritis at 18, at the start of a promising tennis career

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

• Rapp, Emily. Poster Child: A Memoir. Born with a shortened leg that later required amputation, Rapp became a poster child for the local March of Dimes--a vivid depiction of what it is like to live with a "grievous flaw," and finally to accept it.

• 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)

• Ricker, Allen. The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life. At 51, this TV writer became a victim of transverse myelitis, a rare neurological disorder that left him paralyzed from the waist down. A "potent memoir" and a guidebook for anyone who is disabled, writes Publishers Weekly reviewer.

• Sacks, Oliver. Migraine

• 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

• Sontag, Rachel. House Rules: A Memoir (how Sontag survived growing up in a dysfunctional family ruled by her controlling doctor father -- her mother advised her to watch what she said as her father was recording her phone calls)

• 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)

• Stacey, Patricia. The Boy Who Loved Windows: Opening The Heart And Mind Of A Child Threatened With Autism. PW calls this "a sharply observed, deeply personal account of her son Walker's metamorphosis from a worryingly unresponsive infant to an intelligent, normally functioning child." Stacey spends a huge amount of time following child psychiatrist Stanley Greenspan's "floor time" strategy for Walker: several hours a day of rigorous interactive playtime between parent and child (see The Child With Special Needs).

• 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, Blake E.S. ADHD & Me: What I Learned from Lighting Fires at the Dinner Table. Memoir and lessons learned by a college freshman, diagnosed with attention deficit hyperactivity disorder (ADHD) when he was five

• 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)

• Wakefield, Darcy. I Remember Running: The Year I Got Everything I Ever Wanted-and ALS. Wakefield discovers she has amyotrophic lateral sclerosis (ALS), the incurable, progressive neuromuscular degeneration known as Lou Gehrig's disease, at age 33, when she also meets Mr. Right. She writes of her losses (walking, speech) and gains (love, a new home, a long-desired pregnancy). Listen to her on NPR, also: ALS Ends Running Days and Life with Lou Gehrig's Disease.
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• 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)

• Wilson, A.N. Iris Murdoch As I Knew Her. A literary memoir that portrays "Murdoch as novelist & thinker, not Alzheimers poster child," as one reviewer put it, by contrast with the books by Murdoch's husband, John Bayley, especially Elegy for Iris.

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

• Young, Joan W.. Wish by Spirit: A journey of recovery and healing from an autoimmune blood disease. Joan contended with immune (idiopathic) thrombocytopenic purpura but this may be helpful for anyone with a platelet disorder.

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BOOKS ABOUT COPING 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
• Fox, Michael J. Always Looking Up: The Adventures of an Incurable Optimist (about finding the opportunities that arise--including a new closeness with his family--when struck by a disease like Parkinson's)
• Groopman, Jerome. The Anatomy of Hope: How People Prevail in the Face of Illness
• Hallowell, Edward M.and John J. Ratey. Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood (or, for those who have trouble reading, the small-byte-sized Answers to Distraction. Both available as books on tape. Read an excerpt from their book Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder. The authors, both professionals, also have ADD.
• Hartwell, Lori. Chronically Happy: Joyful Living In Spite Of Chronic Illness
• Hodgdon, Linda A. Visual Strategies for Improving Communication : Practical Supports for School & Home (helpful for students with autism)
• Jergen, Robert. The Little Monster: Growing Up With ADHD by Robert Jergen. (Read the preface)
• Johnson, Hillary. Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
• Jones, Sue. Parting the Fog: The Personal Side of Fibromyalgia/​Chronic Fatigue Syndrome
• Kabat-Zinn, Jon. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. Kabat-Zinn, founder of the Stress Reduction Clinic at the University of Massachusetts Medical Center, is perhaps the best-known proponent of using "practiced mindfulness" to control and calm our responses without blunting our feelings, to help patients deal with stress and chronic illness.
• Kasper, Edward K. and Mary Knudson. Living Well with Heart Failure, the Misnamed, Misunderstood Condition
• Kelly, Julie W. Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia, fifth edition (get whichever is most recent, for updates)
• Sacker, Ira M. Dying to Be Thin:Understanding and Defeating Anorexia Nervosa and Bulimia--A Practical, Lifesaving Guide
• Silver, Marc.Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure (and check out the low-salt, no-salt cookbooks while you are looking at reviews of this book)
• Sveilich, Carol. Just Fine: Unmasking Concealed Chronic Illness And Pain (a "comfort" book, more than a "coping" book, writes reviewer Margy Squires)
• Teitelbaum, Jacob. From Fatigued to Fantastic (a guide to treating chronic fatigue and fibromyalgia)
• Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers, and Providers ("comprehensive, realistic, and compassionate"--required reading, well-written, and frank about people and approaches that have not benefited patients with this problem)
• Weintraub, Pamela. Cure Unknown: Inside the Lyme Epidemic
• Wells, Susan Milstrey. A Delicate Balance: Living Successfully with Chronic Illness. Milstrey’s problems: Sjφgren'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).

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