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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Nancy K
New York, NY


I am a 29 year-old who has been living for many years with Chronic Fatigue Syndrome, Fibromyalgia, Non-Epileptic Seizures, and Clinical Depression. I have just begun my Masters in Social Work Degree, something I have wanted to achieve for several years, but had to put school off due to all my illnesses. I have to say that these illnesses have impacted every aspect of my life. Perhaps the most devastating aspects of my chronic illnesses are the lack of predictability and the social isolation that goes along with them. I rarely make plans to see friends because I don't know how I am going to feel from one day to the next. I have lost many jobs due to constant absences.

Another frustrating aspect of having invisible chronic illnesses is the lack of understanding and compassion from family, employers, and even health care providers. I hate the fact that my doctors and family always say I look fine and that Fibromyalgia and Chronic Fatigue are not real illnesses. Other times, I have been told that I was faking seizures and that all my physical problems were manifestations of stress. Well, I wish for one day that these people can walk in my shoes and experience first hand the debilitating pain, fatigue, headaches, "brain fog," and sadness I experience on a daily basis. I am 29 years old and I feel like I am 80. These illnesses have robbed me of my energy, my friends, my ability to do things I used to do, and my hope for a bright future.

When I become a social worker, I planned to work with people with various disabilities, including chronic illnesses. I would even love to start my own organization for people that live with both psychiatric illness and medical illness. The mind-body connection has always fascinated me. I think everyone that experiences chronic illness experiences depression or extreme sadness at one point. I would love to hear from others who have had similar personal experiences or have similar professional interests. It helps to hear from others who can validate your feelings and let you know you are not alone!

YOUR STORIES
Zoe Albright, Stroke
Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures

WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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