Unseen Still Matters by Sydnee Jones

What You Canâ&#x20AC;&#x2122;t See Still Matters

Invisible Illness in Our Society Today

Table of Contents - What is an Invisible Illness? - Defining Invisible Illness

- The Scope

- Invisible Illness in Our Society -History and Nature - Invisible Illness vs. Society: The Issue - Ramifications

What is an Invisible Illness?

- Proposed Solutions to the Problem

- Legal Parameters

- Educate the Public

- Learn to Accept, and be a Friend

- Appendix - Bibliography 2

Defining “Invisible Illness” If you’re like the majority of the world’s population, the term “Invisible Illness” is new to you. An Invisible Illness is any auto-immune disease that severely affects the body, and usually has no physical affect in regards to the outer physic of a person. When you hear the word “illness” or “sick”, your mind is most likely to pull up a mental image of one who is gaunt, has pasty skin, is vomiting, or maybe is missing hair from chemo treatments. When you hear the word “disability”, you begin to think of those with an obvious mental disability like Down Syndrome, or maybe someone that needs the assistance of a cane in order to move around. With an Invisible Illness, none of these apply to a person, at least for quite a while, yet they are still sick. They are often disabled because of the attack on their body, yet no one can see why. For years, someone suffering from an auto-immune disease can walk down the street in a crowd of people, and nobody would be able to pick them out as different from anyone else. They look as if there is nothing wrong with them. Yet, what goes unseen to the human eye can be far worse than you can imagine.

Just to name a few commonly known Invisible Illnesses, there are MS, diabetes, and Fibromyalgia. You may have heard these names before, but you may have never put them together with the term “Invisible Illness”. Each of these disease can wreak havoc on an individual, and just by looking at them you may never know. For example, lets look at Fibromyalgia. A lot of what goes on with Fibromyalgia is unknown to the medical world. It is unexplainable, which can be the most frustrating thing to hear for someone who lives with it. Fibromyalgia attacks the main joints of the body and causes terrible, aching and shooting pains that cannot be helped. It causes extreme fatigue, difficulties sleeping, headaches, cramping in the lower abdomen, and cognitive difficulties. There is no cure, and often the medication that is given to help control the pain (not take away the pain) has awful side effects, such as memory loss, loss of energy, etc. With all this going on inside the body, the person can still look as what we have labeled as “normal”. They can have beautiful hair, teeth, skin, great physical shape, etc. Nothing physically proves what they are feeling as to be actually occurring. To us on the outside, it’s invisible.

You’ve all heard the phrase, “Seeing is believing”. The harsh reality to those that live in a world of an Invisible Illness is that the sometimes the most real things go on unseen. In a world that depends on physical proof for truth, the effect of society’s treatment of those who live with an auto-immune disease has become an issue, which we’d like to explore with you today throughout this booklet.

The Scope of the Issue Invisible Illness affects more than 125 million Americans. For more than 40 million people, their illness limits their everyday life. Invisible Illnesses range from something as simple to allergies to a fast spreading cancer.

Here is a list of just some of the known Invisible Illnesses. You’ll see that many of them either are a part of your life, or someone who is close to you. They aren’t has uncommon as you may think.

- Allergies and Food Intolerances - Rheumatoid Arthritis - Cancer - Chronic Fatigue Syndrome - Fibromyalgia and Chronic Myofascial Pain - Depression and Mental Illness - Diabetes and other Blood Sugar Issues - Digestive Disorders (such as; IBS, colitis, Celiac, etc.) - Headaches, Migraines, etc. - Heart Conditions - Infertility - Lupus - Lyme Disease - Multiple Sclerosis - Neurological Diseases - Sjogren’s Syndrome

According to Disabilities Affect One-Fifth of All Americans, “A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).” The hard thing about visualizing the scope of Invisible Illnesses is that they are not visual to the human eye. It is very likely that someone in your everyday life is suffering, but leading a “normal” life. In an article entitled Renegotiating Identity: Exploring the Impact of Chronic Illness, the impact of multiple sclerosis is

explored through the eyes of a physical education teacher. In â&#x20AC;&#x153;Invisible Illness in our Societyâ&#x20AC;?, Patricia Bevilacqua (the author and subject) felt strong and capable. She taught over 500 students the importance of a healthy body. After being diagnosed with MS, Patricia continued her career and lifestyle. However, her condition eventually worsened and she was forced to retire. The impact of an Invisible Illness may sometimes be easily controlled by diet, treatment, and lifestyle. Other times, it may be difficult to live with everyday. Some Invisible Illnesses are short term and others are chronic. Invisible Illnesses vary in terms of severity, length of time, and of treatment available. One universal understanding is that Invisible Illnesses are simply that: Invisible. However, that does not mean that those suffering need to remain as invisible as their illness

Invisible Illness in our Society

History and Nature Invisible illnesses or invisible chronic illnesses have been around for centuries, and in the past they were always misunderstood. Examples include records of symptoms that closely resemble migraines (a condition considered to be a chronic Invisible Illness) dating back to Babylonian writings in 3000 B.C. In this era, many of these Invisible Illnesses were blamed on evil spirits or possessions, and therefore seen as a real issue. Another example is diabetes. Although there has been a rise in diabetes (another Invisible Illness) in the new millennium, the first clinical description of diabetes was given by the Ancient Greek physician Aretaeus of Cappadocia in 1st century C.E. In addition to these two historical findings, several descriptions of illnesses resembling those of chronic fatigue syndrome have been reported for at least twohundred years. The existence of these illnesses aren’t new, but rather the realization of the causes and frequency has become more common place. However, real awareness and support for those with invisible diseases did not start until the early 1990’s. Paul J. Donoghue and Mary E. Siegel published “Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness” in 1994. This was one of the first widely published books describing the emotional and mental turmoil that accompanies a chronic invisible illness. This book (which

sold nationally) became the first inside look into the emotional and mental pain facing those who suffer from Invisible Illnesses, as well as highlighting the strain put upon their relationships with their loved ones. Movements advocating for understanding didn’t snowball, however, until 2002, when the Invisible Illness Awareness Week was started by Lisa Copen, founder of RestMinistries. Lisa had become familiar with Invisible Illnesses through Donghue and Siegel’s “Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness”. Through her research she discovered that resources for support were limited those who suffer with an Invisible Illnesses. Through the years, the Invisible Awareness week has grown and encouraged more support groups and programs to help those with Invisible Illnesses and their families find comfort, support, and understanding. Now in 2015, there are major companies, organizations, and websites available around the world for communities with Invisible Illnesses to find support, understanding, and help. However, there is still prejudice and lack of understanding from the general public towards many who suffer from chronic Invisible Illnesses, which proves that the need for information and understanding is not over yet.

Ramifications

Invisible Illness vs. Society: The Issue

Those with invisible illness are more likely to be misunderstood and judged for taking advantage of accommodations. Since more than 125 million Americans have at least one chronic condition, symptoms and severity are often varying from person to person, disease to disease. Such symptoms may include debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions (brain fog), learning differences and mental disorders, as well as hearing and vision impairments. For many individuals, a very visual indicator of their disability is their handicap parking placard. Handicap parking spaces allow persons to conserve energy and perform basic functions, such as grocery shopping. This person, however old, may appear completely healthy. Onlookers may be unaware that the person does truly need that closer space. Judgmental looks, comments, and actions are often passed on to that individual. On top of their exerted efforts to grocery shop, they must then deal with the prejudice of passerbyâ&#x20AC;&#x2122;s. Examples of disabilities that may require a handicap parking pass include: Back Injury, Brain Injury, Chronic Illness, Chronic Pain, Heart Condition, Muscular Disorders, Neurological Disorders, Seizure Disorders, Spinal Disorders,

Bone Disorders, Chronic Injuries, Organ Transplant, Oxygen Impairment, Difficult Pregnancy, Prosthetic, Surgery, Chronic Fatigue Syndrome, autoimmune illnesses and many more. Allan Appel stated, “Only visible physical disability is implied by such a symbol, thereby fostering a certain prejudice toward those with invisible disabilities. A possible solution being bandied about is to change the sign to a simple blue field with a bold white capital letter ‘D.” People with invisible illnesses must be an advocate for themselves, since little is known about the struggles they face. “But you look so good” is a common phrase disabled individuals are met with, and the stigma of being unconnected, lazy, rude is met with whispers behind their backs. Flares in diseases can leave a level of unpredictability for sufferers that may have them high functioning one day, and incapacitated the next and not have much of an explanation. Those suffering from invisible diseases and disabilities are more apt to develop depression and anxiety as a result of being misunderstood. Individuals are often met with

skepticism and lack of understanding, which makes their experience feel very invalid. Learning to cope with her own disorder through increasing self-awareness, and helping others to become aware are all solutions to helping to create a more stable environment for the sufferer. Depression and anxiety can set in after the original set of symptoms due to the unsupportive attitude of both doctors and close family and friends who assume one is making excuses to avoid normal responsibilities. Due to the variety of invisible disorders sufferers are less likely to experience the same levels of energy, stamina, and functionality as that of another person. Yet, due to the inherent differences of the eighty plus auto-immune diseases, symptoms vary from disease to disease. Expressing these variances is often met with skepticism since the onlooker cannot see that anything is wrong. Progress has been made over the last twenty years to help some autoimmune conditions become more known, example multiple sclerosis (MS). “Not all chronic diseases are equal. Some are more accepted than others,” says Patricia A. Fennell, the CEO of Albany Health Management Associates, Inc.

Looking for a job as a person with an invisible illness is harder and requires more work. Most invisible illnesses hit around prime career-building years. Disclosing information to your employer is a personal decision but will not always be met with acceptance and accommodations. Education material is necessary, along with knowing your rights under ADAs act.

sick, you’re too young to be sick, everyone gets tired, you’re just having a bad day, it may be nice not to have to work or attend school, you need to get more exercise, I wish I had time to nap, the power of positive thinking, just push through it, it will get better-just be patient, have you tried _____, you should stop _____, it’s all in your head, you need to get out more, you take too many medications.”

Invisible illness can hinder a person’s ability to go to work, school, socialize, and more. More than 40 million Americans have a disability that limits daily function. “Those with invisible disabilities can present with varying symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions (brain fog), learning differences and mental disorders, as well as hearing and vision impairments. Most of these chronic invisible conditions are not always obvious to an observer, but can sometimes or often limit daily activities. These disabling symptoms can range from mild challenges to severe limitations and vary from person to person. Having an invisible illness can prohibit the sufferer from enjoying life in the way they once knew,” states a leading nonprofit organization called Molly’s Fund. Medications and lifestyle adjustments will help someone who has this disease, but will not cure it. It is not curable. Social stigma is often a reality of someone suffering from an invisible illness. Words can hurt disabled individuals by invalidating their experiences and belittling their pain. Examples of phrases not to say include: “You don’t look

Create Legal Parameters Many Invisible Illness sites are riddled with personal experiences of lost jobs, verbal abuse, harassment, and even vandalism. Finding justice for those wronged by these crimes is a solution to the issue with prejudice against those with Invisible Illnesses.

Proposed Solutions to the Problem

The first key component of this solution is to add specifications in Equal Employment Opportunity Commission laws to include language specific to those with Invisible Illnesses. The law requires an employer to provide reasonable accommodation to an employee or job applicant with a disability, unless doing so would cause significant difficulty or expense for the employer (“undue hardship”). In the section “Definition of Disability” in Equal Employment Opportunity Commission Law, these words would be added: “A person may be disabled even if the physical appearance of such disability is not on first appearance apparent.” Fern Trevino, an Employment Attorney at Trevino Law Firm in Chicago had this to say, “Adding to the Equal Employment Opportunity Commission law would take some time, but the wording used would benefit many who bring their case to us. Having that precise description would work to be better evidence toward proof of discrimination”

The reason this addition is so crucial to the support of those with Invisible Illnesses is because many companies turn away those with invisible illnesses before fully understanding the issue. A study done by the researchers at Cornell University’s Employment and Disability Institute found that the most commonly filed disability discrimination suits between 2005 and 2010 were due to invisible diseases. Trevino explains the issue, “This is commonly what causes us to win a case. Finding that the company dismissed the individual without solid information or understanding, shows discrimination because they did not make a well-thought out decision.” For Trevino, one of the biggest fights in the courtroom is proof of discrimination or harassment. “A big issue with Harassment cases is that the available evidence is hard to obtain. Word of mouth can only go so far in court, and is always questioned and can be spun to tell a different story.” By introducing these measures, more justice will be found for those who suffer from invisible illnesses, as well as help create a stronger reality of their conditions and the challenges they face.

Educate the Public Socially, Invisible Illnesses are just that, invisible. It is important to educate the masses in regard to these situations so that the world can gain more knowledge and empathy for those around them. Psychologist Dr. Warren Icke discussed the role that society has to be informed and that those suffering have to help with the informing. Dr. Icke advices those who have Invisible Illnesses; “...speak to others, when the topic comes up. Share their experiences on social media. Explain to employers and coworkers why they seem to miss work on a more frequent basis than other people.” Those afflicted with infertility, chronic pain, cancer, or a heart condition, have a powerful voice to an otherwise silent conversation. Those fortunate enough to be without these conditions can only learn when sufferers are brave enough to speak up and share their experience. Dr. Icke continues; “Society is made up of one person at a time, and if those who suffer can tell one person at a time

(friends, family, coworkers) society will eventually come to understand things like chronic fatigue syndrome, depression, anxiety, chronic pain, chronic illness, etc.” Helping to understand the diseases will also benefit the families of those involved. InvisibleDiseases.Com is a site where those who suffer or know someone who is suffering can join together to discuss their everyday lives. Sometimes all you need is a friend!

invisible illness, being aware of what they are will make you a better person. Understanding that there may be a problem under the surface will help you to look past the labeling. An educated society would be able to understand empathy without needing to see the problem.

According to ‘What You Can’t See Does Hurt Her,’ “There is now really good evidence for a genetic link [since] genetic markers for FM and CFS have recently been identified,” says Fennell. “Episodic and regional ‘outbreaks’ of CFS have been documented, suggesting genetic, viral, and/or environmental causes.” If some of these problems are genetic, then by educating society we are more likely to catch early signs of these diseases to give help to those suffering. While it may be no excuse for bullying or rudeness, a lack of understanding causes confusion for society. Education will inform people around us and will allow for safer lives for those suffering and their families. Even if you know no one in your life is suffering from an

Learn to Accept, and Be a Friend You probably know someone who suffers with an invisible disease. How can you help? What can you do? The best person to someone with an invisible illness isn’t someone with a stethoscope around their neck. Doctors do not have all the answers, especially with regards to the ever-evolving knowledge of auto-immune and other invisible diseases. Accepting what you may not be able to see as a true medical condition, and not something that is just “in their head” simply because you do not understand it is the first step toward healing for that individual. You make all the difference by reaching out and being a friend. Accepting their ebbs and flows of health as their norm and being willing to work around such variances helps the person suffering feel important and valued. Those suffering with these conditions need someone in their life who is willing to work around their flare-ups and times of struggle. Some days may be a wonderful time to go roller skating, while other days getting out of bed to brush their teeth may be all they can manage. Remember to be flexible and understanding.

“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME Research UK. He describes the lot of the ME patient as a “Kafkaesque nightmare”. “There isn’t any education on the illness in medical schools and the GP hasn’t got anywhere to go [for information].” The scientific literature remains small: 2,500 articles over the Learn to Accept, and Be a Friend past ten years compared with 20,000 for MS. What do we know about the condition? “It depends on what you mean by know,” Abbot replies. “There are thousands of individuals who are definitely ill. They think they have a physical illness and most of their families do too. Some are put in a box called Chronic Fatigue Syndrome, many aren’t diagnosed. The treatments on offer are psychologically based, such as cognitive behavior therapy and graded exercise. They help some individuals to cope with the symptoms but they aren’t the answer. Our aim is to make people recognize that there is a biomedical problem to be addressed.” Doctors and patients are trying their best to get better and learn more about invisible illnesses. Just because we do not have all the answers yet doesn’t mean the disease isn’t real. When asked what is most frustrating about their illness, most patients with invisible disease say it’s their ability to maintain relationships and receive the

empathy they deserve. Invalidating someone’s experiences by not trusting their symptoms will not help them heal faster. Depression is 15-20% higher for the chronically ill than for the average person and plays a key role in the happiness and health of that individual. Studies have reported that physical illness or uncontrollable physical pains are major factors in up to 70% of suicides.

Erin Burris who lives with Multiple Hereditary Exostoses (MHE) says;

Carla Yount, who lives with endometriosis and interstitial cystitis explains, “I just need for someone to realize and validate that I am pushing as hard as I can.” Rather than validating one’s pain and effort, the cliché comments like, “My sister’s friend’s neighbor had that and he tried some vitamin water and he’s fine now,” end up sounding more condescending than concerned.

Assuming the best will help those suffering gain the strength to go day-to-day. Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people. Generally, our society believes that chronic illness is something that happens to older adults.

Rather than giving advice on how to fix the issue, most individuals would prefer to have someone to listen and validate. Please remember that each life is precious, and too often the pain of the illness and the pain of being misunderstood feel all too much for these individuals.

“It makes me feel like I’m stupid. Do they think I haven’t looked everywhere for treatment options? It also makes me feel like I’m not trying hard enough to get better.”

“It frustrates me when people speak down to me because of my age,” shares Brittany Washburn who lives with reflex sympathetic dystrophy. It’s not uncommon for young adults (anyone under 50) to hear “You are too young to have that!” Ask for ways you can help. Offer to do the little tasks to help

the person conserve their energy. Don’t assume the person who is walking merrily into the store after parking in a handicap spot is lying to get that spot. Assume the best intentions. There are advantages and disadvantages to every solution. Unfortunately, we can’t just change people’s perceptions of those around us, but we can help them to see what life may be like for others. Providing Invisible Illness simulations, sharing stories of individuals lives, and helping others to realize that we’ll never have all the answers goes a long way. We may not be able to identify the why’s behind every disorder, but we can help to strengthen those who are struggling. We do not need to tear each other down, but build each other up. The advantages to this are innumerable. We will be a stronger and happier society. We will learn to only take what is ours and help those with our extras. The disadvantages are those who take advantage of the resources. It’s often hard to tell the fakers from the genuine, but according to the research, it’s always better to assume the best intentions.

Appendix

Appendix Cont. Kristen Price - Writer

Biography Kristen Price is from Glendora, California. She is currently studying Communications and Political Science at Brigham Young University-Idaho. She is expected to graduate in the spring of 2015. She has been married to Scott Price for four years. Participation in this Issue Book Kristen contributed an interview with psychologist Dr. Warren Icke and addressed the scope of Invisible Illnesses. Kristen also developed a proposed solution to the issue by researching public awareness.

Appendix Cont. Charlotte Thurber - Writer

Biography Charlotte Thurber is a Communications major at Brigham Young University-Idaho and will graduate in April 2015. Charlotte has been married to Brian Thurber for two years and will have her first child in September. Participation in this Issue Book Charlotte Thurber carefully researched the legal responsibility for the protection of those with Invisible Illnesses and strove to find a solution to the constant issue of harassment and prejudice. Charlotte also researched the history and nature of Invisible Illnesses, as well as its introduction into a modern day dilemma.

Appendix Cont. Tara Denkers - Writer

Biography Tara Denkers is a 24 year old senior at Brigham Young University-Idaho studying Communications. She currently puts her knowledge to work as a full-time employee of a local food bank in Provo, Utah on their Communications team. She expects to graduate in July 2015. She coaches figure skating and eats lots of froyo for fun. She has recently been diagnosed with several auto-immune diseases and is learning to manage the symptoms. This topic was very pertinent to her life and she is patient about helping others overcome some of the struggles she has faced along the way. Participation in this Issue Book Tara Denkers was responsible for completing strategic research, researching the ramifications of the problem, and researching the acceptance process for invisible illnesses as legitimate diseases. Additionally, she completed several interviews with experts in this field.

Appendix Cont. Sydnee Jones - Editor

Biography Sydnee Jones is a University Studies major with an emphasis in Communications at BYU-Idaho and will be graduating July 2015. She recently returned from serving a mission for her church in Brazil, and is consequently fluent in Brazilian Portuguese as a second language, and she plans to use it throughout her future career. Participation in this Issue Book Sydnee was responsible for the design and layout of the Issue Book and Appendix, as well as the phrasing and structuring of items in the table of contents and all sections of the Issue Book and Appendix. Sydnee also wrote the section â&#x20AC;&#x153;Defining Invisible Illnessâ&#x20AC;?.

Appendix - Personal Reflections

Appendix - Personal Reflections Cont.

“I had never heard of invisible illness before this project. I understood that people suffered from a number of things that could not be seen to the natural eye on the exterior. I never knew it was such a common problem and I did not know that they were categorized as Invisible Illnesses. Learning about what Invisible Illnesses are and how common they are, helped me to understand the world around me. I can have more empathy and patience for those around me because we never know what people are suffering on the inside. Understanding invisible illness will help me to be more sensitive to the people around me and help others to educate themselves. It is important for growth that we take our education and apply it to our lives.” =Kristen Price

“Disability affects more than forty million Americans. We often equate disabilities with wheelchairs and canes, and those are legitimate needs. This past year I’ve learned that the word disability means even more than I originally acknowledged. With my diagnoses of varying autoimmune disorders came my ‘disability’ status. This status is recognized nationally, and at first I was hesitant to accept such a label. Would people treat me differently? Would people think I’m lying?

“Invisible Illness is a subject that is close to me personally. I have had the acquaintance and friendship of those who suffer from Invisible Illnesses that have been harassed and publicly embarrassed based solely on the fact that their disability is not seen on the surface. I felt a personal call to represent these people, and to aid in the effort to stop harassment and discrimination of these individuals.” -Charlotte Thurber

Learning to accept others at their word, validate their experiences, assume best intentions, and treasuring the contributions they do make can really change our outlooks. After interviewing several professionals and hearing their personal experiences, it made this assignment all the more real. We must change the way we treat those with disabilities, visible or not. There are many ways we can start to address this problem. We must start today.” -Tara Denkers

Turns out accommodations are sometimes necessary for me to function as well as others around me. These requests for accommodations are sometimes met with hurtful words. I’ve appreciated this assignment and the opportunity to look at ways to better address invisible illness and the struggles that many face each day.

Appendix - Personal Reflections Cont. Personal Reflection on this Work “I was personally unaware as to what is an Invisible Illness, and did not realize how much it was something that is a part of my life. I have an aunt with fibromyalgia, as well as some other family members with other Invisible Illnesses, and I’ve always had a hard time seeing what they went through as the struggled with their illness, and then have to put up with a lot of insensitivity from the people around them. As I read the research done on this topic, I became more aware of those that surround me. I began to understand what they might be going through, and I also was able to defend them against those that verbally complained and were insensitive.

Bibliography

I found myself much more educated on the subject, and much more aware of others. I have much more patience and find no room to judge others due to this project. Those who will read the Issue Book will find it just as enlightening, and I feel that it will continue to help those with an Invisible Illness be able to live their lives with less preconceived ideas as the public become more educated about their situation. I am so glad that these ladies did such amazing research and did such a great job at presenting the issue at hand and possible solutions. It didn’t just help me, it’s helping those that are living with an Invisible Illness every day!” -Sydnee Jones

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