Seeing Invisible Illness

“But, you look great!” Although it may feel nice to have someone tell you that you are “looking great” or “have never looked better”, if you feel terrible inside the compliment does not carry much weight. Unfortunately, or maybe, fortunately, depending on your outlook, not all illnesses show their symptoms on the skin. Those are what we refer to as an “invisible illness”.

What is an invisible illness?

When you break your leg or pull a muscle in your back, you may be in pain and uncomfortable, but others are often able to see your outward discomfort. You may be in a wheelchair or on crutches, or you may struggle when you try to stand from a sitting position, but your condition is visible. For the millions of people who suffer daily with the symptoms of invisible illness, the situation is quite different. Aside from the symptoms, you have to deal with every day that are related directly to your illness, you have an added side effect; the constant pressure to explain your condition and your symptoms to those around you who do not understand what is wrong.

Invisible illness is an all-encompassing umbrella term for a condition (illness or disability) that is not outwardly visible to others. Unfortunately, many people who deal with these conditions each day are often accused of faking or imagining their illness or disability. In a world where “seeing is believing”, asking someone to accept or understand that you are experiencing something they simply cannot see is challenging at best.

Invisible illnesses-a few examples

Invisible illnesses can fall into a variety of categories and include physical illnesses and disabilities as well as mental illness. Many of the illnesses that are classified as invisible illnesses are neurological in nature. Believe it or not, the list of illnesses that could be classified as invisible is very long. Below we have listed a few just to help clarify how different these illnesses can be. Additionally, you may be familiar with many of the illnesses listed below and surprised that they are considered invisible since they are spoken of so often in society.

Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a complicated disorder. It is generally characterized by extreme fatigue that does not improve with bed rest. The symptoms of fatigue may worsen with even the simplest mental or physical activities. Unfortunately, the causation of this disorder is relatively unknown, and therefore treatment is also quite challenging. Symptoms of chronic fatigue syndrome include widespread muscle and joint pain, cognitive challenges and chronic (often severe) physical and mental exhaustion. Chronic fatigue symptom is not as prevalent as some other invisible illnesses and is only estimated to affect roughly half a million people in the United States. Chronic fatigue syndrome occurs more often in women than men; onset is commonly seen in people in their 40’s and 50’s and generally occurs quite suddenly as “flu-like” symptoms. Treatments for chronic fatigue syndrome include a wide range of various things including mediations, diet changes, supplements and in some cases, psychotherapy including cognitive-behavioral therapy. Many people with chronic fatigue syndrome do not ever fully recover even with treatment.

Crohn’s Disease

Crohn’s disease is a disease of the bowel characterized by inflammation and swelling. In Crohn’s cases, the digestive system suddenly becomes swollen and deep sores (ulcers) appear. Crohn’s may impact any part of the digestive system. Common symptoms of Crohn’s disease include abdominal pain, diarrhea, fever, and weight loss. Depending on the individual symptoms outside the digestive system may present as well. These can include anemia, skin rashes, arthritis, eye inflammation and tiredness. Crohn’s is most typically present in the last portion of the small intestine and the first portion of the large intestine; however, as noted above, it can appear anywhere throughout the digestive tract. The exact cause or causes of Crohn’s is currently unknown to medical science; however, an abnormal immune response to otherwise healthy bacteria that is present in the digestive system. Crohn’s disease may also be hereditary and the chances of developing Crohn’s are higher among people of Eastern European Jewish descent. How a specific case of Crohn’s is treated will depend on the symptoms the person is experiencing as well as the severity of the symptoms. The most common treatments include medications, dietary changes and, in some cases surgical interventions.

Endometriosis

Endometriosis is a female health condition that results in severe pelvic pain. Endometrioses causes tissue that normally lines the inside of the uterus to grow outside the uterus and often, on surrounding organs. Endometriosis can result in severe, sometimes debilitating pain and, in some cases fertility problems. As with many invisible illnesses, doctors do not know the exact cause of endometriosis although there are many, many theories. One thing that has been determined by research is that there is a strong link between the thyroid and endometriosis. Some studies have shown that approximately forty percent of women who have endometriosis are also suffering from an overactive thyroid. It is also important to note that genetics do also play a role in endometriosis. Daughters or sisters of women who have been diagnosed with endometriosis are approximately six times more likely to develop endometriosis themselves. Currently, there is not a cure for endometriosis. However, there are several treatment options available which range from observation to surgical intervention. Hysterectomy or menopause are not permanent solutions. Symptoms of endometriosis still persist in nearly forty percent of women who have had a hysterectomy or are currently menopausal.

Fibromyalgia

Fibromyalgia is a chronic condition often described by sufferers as pain all over the body and feelings of constant exhaustion. Unfortunately, doctors who examine patients with fibromyalgia often cannot find anything that is specifically wrong despite multiple tests. Fibromyalgia is characterized by widespread chronic pain and an increased response to pain and pressure. Other symptoms of fibromyalgia include debilitating chronic fatigue, sleep disturbances and stiffness in the joints. Many suffers also report tension headaches, TMJ disorders, irritable bowel syndrome, anxiety and depression. It is estimated that fibromyalgia affects approximately five million Americas over the age of eighteen. An astounding eighty percent or more of people diagnosed with fibromyalgia are women. Treatments for fibromyalgia include a variety of medications depending on the symptoms and the severity of symptoms experienced by the individual. Cognitive-behavioral therapy is also utilized to help the individual learn how to manage their symptoms and to teach various methods for dealing with the stress and anxiety that often accompany the illness.

Lupus

Lupus is an autoimmune disease that can affect different parts of the body. People who are diagnosed with Lupus may experience problems with their heart, lungs, brain, kidneys, skin and joints. There are many different kinds of Lupus and each kind manifests slightly differently. For a person with Lupus, the immune system is unable to differentiate between antigens (toxins or foreign substance) and the tissues and cells in the body. As a result, the immune system creates antibodies that fight against the perceived invaders and cause pain, inflammation, and damage to various parts of the body. The most noticed feature of Lupus is inflammation. The inflammation is characterized by heat, redness, loss of function, pain and swelling inside or outside the body or both. Cases of Lupus can be very mild, or they can be life-threatening. Although diagnostic statistics are minimal, it is thought that approximately sixteen thousand Americans develop Lupus every year. Ninety percent of those living with Lupus are women between the ages of fifteen and forty-five. The cause or causes of Lupus are unknown at this time but it is thought there could be genetic and environmental factors involved. Treatments for Lupus are highly individualized as the symptoms and experiences of each patient will vary highly. Depending on the organ or organ systems involved, various types of medications may be used to limit symptoms and help the person to regain or maintain function.

This list is by no means exhaustive. There are many other physical and mental health illnesses and disorders that fall into the category of invisible illness. This shortlist was simply chosen because these are recognizable illnesses. You have heard of them so how can they be considered invisible? Unfortunately, many of the people who suffer from the symptoms of these illnesses suffer behind closed doors as their symptoms are not often outwardly visible. Additionally, how living with the symptoms on a day to day basis affects everything from their relationships to their employment is also not generally visible to those around them.

Why invisible illness is dangerous

Invisible illness could indeed be more dangerous than those illnesses that are more easily understood. When someone is diagnosed with an invisible illness, it can alter everything about the world they are used to. The world and the people in it will continue to you as the healthy and happy individual you outwardly present, however, on the inside, you are anything but. Nearly half of the population of the United States lives with some type of chronic condition or Illness. Of those cases, a staggering ninety-six percent are invisible illnesses.

May of the most debilitating conditions are not only invisible to the naked eye but also to medical professionals who are trying to determine what is wrong. This does not mean the condition; illnesses or symptoms do not exist. However, it does mean that medical science is still struggling to explain many of the symptoms people are experiencing. Unfortunately, this sometimes results in someone being told their condition is “all in their head” or that they are “faking it” for attention or some sort of personal gain. While this is at best insulting, it can also add to the already high emotional toll someone with an invisible illness is experiencing.

Another dangerous challenge to the inability to easily diagnose many of these conditions is the time it takes for someone to begin to treat the illness. Often with an invisible illness, there are not easily definable criteria for diagnoses and often, the cause or causes of the illness and its associated symptoms are not readily known.  This means someone could be living with debilitating symptoms for a very long time and not have the opportunity to receive treatment as their condition is not correctly diagnosed.

Invisible illness can also have a detrimental impact on one’s ability to receive government benefits, including disability, insurance and coverage for their medications and procedures. Again, the diagnosis process for many of these illnesses can be long and arduous. There may be many tests that do not return concrete results, and therefore, they may not be covered by insurance. People with certain invisible conditions may not be able to continue to work or successfully complete the tasks associated with caring for themselves or their families daily. Unfortunately, until they can receive a proper diagnosis, they may not be able to receive any form of government benefit to help with their needs.

Therapy for invisible illnesses

Many invisible illnesses are treated through the use of both medications and suggested psychotherapy techniques. Unfortunately, many of the illnesses that are considered invisible are also those that do not have a “cure” per se. However, with the appropriate treatment, those with these conditions can often live their lives with a reduction in symptoms that allows them to do most, if not all of the things they used to do.

Talking about the symptoms, experiences, and challenges associated with invisible illness can be highly beneficial. While our residential programs are top-notch, at Hillcrest, we offer more than just treatment in a residential setting. Our team here includes a full staff of medical professionals who are well versed in the various aspects of medical treatment. We have staff members who can help you learn about the medicinal treatment options that have been prescribed to you and how those can benefit you. We also have a full staff of psychologists available to conduct therapy in group or individual settings depending on your needs and comfort levels. If you are curious about how the staff at Hillcrest may be able to help your teenager with their needs, give us a call.