Invisible illnesses are illnesses that cannot be seen by the naked eye. A person with an invisible illness experiences symptoms that are not readily visible to an onlooker, and he/she typically does not require the use of external assistive devices (e.g. wheelchair, cane, braces). Given the invisible nature of these illnesses, they are often difficult to diagnose and can lead to misperceptions and false judgements from others.
Please keep in mind that the words, “but you don’t look sick” can be perceived as frustrating or belittling for a person battling an invisible illness, even when they are said with the best of intentions. Many people struggling with invisible illnesses often feel invalidated, misunderstood, or ignored by healthcare professionals and the general public. Just because an illness is invisible, does not make it any less debilitating or real than a visible illness.
Stats and Facts
- 50% of Americans have chronic medical conditions. (aha.org)
- 1 in 4 Americans have more than one chronic medical condition.(silverbook.org)
- Approximately 96% of people who live with a chronic illness have a condition that is invisible; they do not use any assistive devices and appear healthy. (disabled-world.com)
- About 25% of U.S. adults have a disability, and most invisible disability metrics in the U.S. say that roughly as high as 20% (or more) of Americans have an invisible disability. (accessibility.com)
- Invisible disabilities are the most common type of disability among college students. (disabled-world.com)
Below is a list of some of the most common invisible illnesses. Since there are thousands of illnesses that fall under the invisible illness “umbrella,” it is important to note that this is not meant to be an exhaustive list by any means. The purpose of this list is to provide a brief overview of some of the most common invisible illnesses. If you have an invisible illness that you would like to see added to this list, please contact us at [email protected].
Ankylosing Spondylitis is an “immune-mediated” form of chronic inflammatory arthritis that affects the ligaments, tendons, and joints of the spine. Most commonly, AS causes inflammation of the sacroiliac joint at the base of the spine where it meets the bones of the pelvis. While those living with AS primarily have inflammation in their spine, AS can also cause inflammation in other areas of the body, including heels, knees, elbows, hands, shoulders, ribs, and even the eyes.
There is no single diagnostic test used for diagnosing Ankylosing Spondylitis; rather, diagnosis comes from symptoms, medical history, and thorough physical exams. Medical providers should conduct a physical exam including the spine and rib cage. X-rays and possibly other imaging tests are ordered to assess for bone or joint changes, and blood tests look for inflammation, as well as rule out other forms of arthritis.
Asthma is a common chronic lung disease in which the lungs’ bronchi (airway tubes) become inflamed. The increased inflammation causes sensitivity to environmental triggers such as allergens, smoke, dust, cold air, and pet dander. These triggers can cause a reaction--known as an asthma attack--in which the muscles surrounding the bronchial tubes tighten and airways inflame and overproduce mucus, making it difficult to breathe. Several factors contribute to asthma, such as genetics, exposure to allergens, air pollutants, smoke, respiratory infections, and certain medications. Signs and symptoms of asthma include cough, wheezing, chest tightness, and shortness of breath. These can make even normal activities of daily living difficult, depending on the severity of one’s asthma.
Diabetes Mellitus encompasses metabolic disorders that cause blood sugar (glucose) levels to become too high. It occurs when the body cannot properly handle the sugar consumed to maintain appropriate blood levels of sugar. This can be due to the body not producing enough insulin because of autoimmune disorder attacking the cells (known as Type 1), or the body’s cells becoming resistant to insulin (known as Type 2). Type 1 Diabetes typically develops in childhood or early adulthood, requiring insulin injections for treatment. Type 2 Diabetes most commonly occurs in patients older than 45 and may be managed with diet and exercise, as well as medications. Diagnosis occurs with blood tests. While Type 2 Diabetes can initially occur without symptoms, Type 1 Diabetes typically presents with weight loss, increased thirst and urination, fatigue, nausea, confusion, and even kidney failure. Close monitoring and follow-up with physicians is important to prevent long term complications.
Postural Tachycardia Syndrome (POTS) describes an abnormal response in the autonomic nervous system (controls heart rate, blood pressure, respiration, and digestion) causing lightheadedness, dizziness, fatigue, palpitations, nausea, headache, visual changes, and mental clouding while sustaining an upright posture. With prolonged standing or maintaining an upright posture, patients experience an increased heart rate (tachycardia) without hypotension (low blood pressure). Diagnosis involves in-office evaluation of heart rates while lying, sitting, and standing, as well as possible tilt-table testing. Treatment strategies range from increasing water and salt intake, lower extremity resistance training, compressive garments, and medications to abate tachycardia and increase blood volume in vessels.
Ehlers-Danlos syndrome (EDS) is a group of genetic disorders involving the body’s connective tissues, which make up and support the skin, bones, blood vessels and other organs. There are 6 main types, the most common of which is hypermobility EDS (hEDS). Symptoms include stretchy skin, easy bruising, delayed wound healing, increased flexibility, and “loose” joints prone to dislocations. Early arthritis, dizziness, increased heart rate, nausea, and headaches also frequently occur in hEDS.
Unfortunately, no genetic or blood tests exist for hEDS, making diagnosis reliant upon detailed physical examinations and patient history. Treatment focuses on physical therapy, braces to support joints, non-narcotic pain medications, and counseling to assist with lifestyle modifications.
Lupus is an autoimmune disease occurring when the body’s immune system attacks its own cells by mistake. This causes inflammation that leads to arthritis, rashes, kidney damage, as well as other health complications. Lupus symptoms vary from person to person,and include fever, sun sensitivity, headaches, hair loss, swelling in joints and around the eyes, fatigue, and joint pain. Symptoms can mimic other disorders, including infections and even cancer, making lupus difficult to diagnose. Diagnosis is based on a thorough patient history, as well as blood tests and possibly imaging studies. Treatment depends on symptom severity.
Endometriosis is a painful and chronic condition occurring when a portion of the lining of the uterus (endometrium) grows outside the uterus and on other organs. Symptoms depend on where the tissue grows and may include infertility, heavy or painful periods, pelvic and back pain, fatigue, diarrhea, constipation, bloating, and nausea, especially during menstruation. Diagnosis is difficult and requires laparoscopic surgery to definitively diagnose. While there is no cure for endometriosis, there are treatments that can alleviate symptoms and assist in maintaining fertility.
Fibromyalgia is a chronic disorder that can cause fatigue and pain throughout the body, often described as a constant “muscle ache.” Fortunately, the disorder is not a progressive disease and does not cause permanent damage to the joints, muscles, or other tissues. In addition to pain, symptoms include difficulty sleeping, difficulty with memory/concentration, numbness in the hands and/or feet, headaches, dizziness, and sensitivity to bright lights and loud noises. The exact cause is unknown and there are no tests to definitively diagnose fibromyalgia; however, blood tests can rule out other conditions. Treatment consists of a full person approach, addressing pain, diet, exercise, and stress reduction.
Inflammatory Bowel Disease (IBD) consists of Crohn’s Disease and Ulcerative Colitis. Differing from Irritable Bowel Syndrome (IBS), IBD is caused by the body’s abnormal immune response to the gastrointestinal tract. This causes damage to the GI tract, producing symptoms of nausea, abdominal pain, bloody diarrhea (sometimes containing pus), weight loss, rectal bleeding, fatigue, joint pain, and even rashes.
Diagnosis entails lab tests and a colonoscopy to visualize the colon and take biopsies (samples) of the colon. Treatment involves dietary changes, medications to decrease inflammation, and sometimes surgery.
Migraine is characterized by repeated episodes of symptoms that include headache, typically accompanied by nausea, vomiting, sensitivity to light, touch, sound and smell, dizziness, visual changes, and even tingling in the hands, face, and feet. These occur suddenly and without warning, sometimes preceded by triggers or symptoms known as “aura.” The attacks can last from 4-72 hours and are often disabling. Genetics are a strong factor in determining if one will develop migraines. Treatment is divided into preventive and abortive strategies. Dietary changes, lifestyle modifications, and vitamin supplementation can help decrease the frequency of migraines. When these strategies aren’t effective, medications can help reduce migraine frequency and severity.
Multiple Sclerosis (MS) is a disease involving the central nervous system that causes a variety of symptoms involving the brain, spinal cord, and optic nerve. The exact cause of MS is unknown, but we do know that something triggers the immune system to attack the central nervous system. The resulting damage to myelin, the protective layer insulating wire-like nerve fibers, disrupts signals to and from the brain. Early symptoms can include eye pain and vision problems, numbness or tingling in different parts of the body, balance difficulty, sensitivity to heat, and fatigue. Other symptoms include progressive neurological dysfunction (problems with thinking and memory), pain, weakness, and bowel and bladder dysfunction. Diagnosis involves a neurological evaluation, blood tests, MRI scans of the brain and spine, and sometimes a lumbar puncture (known as a “spinal tap”) to look for proteins in the cerebrospinal fluid.
There is no known cure for MS at this time and treatment is focused on rehabilitation with physical therapy, occupational therapy, speech therapy, or cognitive therapy, as well as medications to slow the progression and treat symptoms.
Rheumatoid Arthritis (RA) is an inflammatory disease that affects joints. It is an autoimmune condition, meaning the body’s immune system attacks its own healthy tissue, causing inflammation and pain. Most often, RA symmetrically affects the joints of the hands, wrists, and knees, with patients complaining of swelling, joint pain and stiffness that gradually worsen over time. Morning stiffness lasting for 30 minutes or more in the hands is a hallmark of RA. Diagnosis occurs through physical exam, as well as blood tests and imaging studies to better evaluate the symptomatic joints. RA is progressive and lifelong, but treatments can alleviate pain and aim to prevent ongoing joint damage. Treatments include lifestyle modifications (including low impact exercise), as well as anti-inflammatory medications and medications to suppress the immune system. With early and consistent treatment, patients can prevent disability and lead full, active lives.
Psoriatic Arthritis is joint inflammation (inflammatory arthritis) that can affect people with a condition that causes a rapid buildup of skin cells, known as Psoriasis. Symptoms typically start with skin rashes and then progress to involving the joints. Fatigue, nail changes, and even irritation of the eyes may also occur. Psoriatic Arthritis is an autoimmune disorder, meaning the body’s immune system attacks its own healthy tissue. Diagnosis starts with a thorough physical exam and includes blood tests, imaging of joints, and sometimes skin biopsies. Treatment aims at suppressing the immune system through medications, as well as topical treatments for rashes, and even light therapy.
Vasculitis develops when the body’s immune system attacks its own blood vessels, causing restrictions in blood flow and subsequent organ damage. It is an autoimmune disorder and can lead to symptoms of fatigue, fever, body aches, loss of appetite, and weight loss. Symptoms are dependent on the area(s) of the body impacted and can lead to vision and hearing loss, as well as damage to muscles and nerves. Due to the wide variety of symptoms, diagnosis often requires blood tests, imaging studies, and sometimes biopsies (small samples taken from the inflamed blood vessels). Treatment consists of medications to stop inflammation and swelling in the blood vessels, and to stop the immune system from causing further inflammation and damage.
Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the connective tissue in the body. Four main characteristics suggest the diagnosis of LDS. These features are not usually seen all together in other connective tissue disorders as major characteristics. These symptoms include: aneurysms (widening or dilation of arteries), which are most often observed in the aortic root (base of the artery leading from the heart) but can be seen in other arteries throughout the body; arterial tortuosity (twisting or spiraled arteries), most often occurring in the vessels of the neck and observed on imaging techniques; hypertelorism (widely spaced eyes); and bifid (split) or broad uvula (the little piece of flesh that hangs down in the back of the mouth).
Diagnosis often relies on genetic testing, imaging of the heart and arteries, physical examinations, and patient history. LDS manifests itself in a number of ways; therefore, no two persons with LDS will have identical medical characteristics. Treatment often focuses on medications, continued imaging with echocardiograms, MRIs and x-Rays, vascular surgery, exercise restrictions, physical therapy, bracing and/or other orthopedic support, and management of environmental and/or food allergies.