What is an Invisible Illness?
An Invisible Illness is defined as "a chronic condition that is not easily observed by the general public." Some invisible illnesses aren't even readily seen by medical professionals. These are illnesses that are debilitating, and prevent a person from performing traditional every day activities, but with no obvious physical symptoms to observers. An illness or injury that is considered chronic is determined by symptoms lasting longer than a year, and often limits activity or impacts normal daily activity while requiring ongoing care.
Those with an invisible illness often struggle to explain their condition to others. Because invisible illnesses aren't easily identified, a person with an invisible illness may feel judged by others, or feel as though others simply do not understand what they are going through.
A person with a chronic condition may be dealing with exhaustion, constant aches or pains, dizziness, or cognitive impairments, and yet may appear to be completely healthy on the outside. In fact, one of the hardest issues with having an invisible illness is explaining to others how a person can look healthy and strong but actually feel sick or in pain.
After a chronic illness has set in, not only does one give up certain abilities from their every day life, but they must also battle explaining this loss of freedom to their loved ones.
Several Well-Known Types of Invisible Illnesses:
Lupus is a chronic autoimmune disease that can affect the skin, joints, and/or organs. For people with lupus, the immune system attacks not only foreign invaders, like germs, but also healthy tissue. These attacks, called flares, cause inflammation, pain, and damage to otherwise healthy skin, joints, or organs.
Read more about Lupus.
Fibromyalgia is a chronic pain disorder caused by a collection of symptoms that stem from the central nervous system. Not much is known about the cause of Fibromyalgia, but research is currently being conducted to better understand Fibro. It's currently believed that genetics play a role in the predisposition of those who are diagnosed with Fibromyalgia. Research suggests that a problem with the hypothalmus-pituitary-adrenal gland axis is responsible for the resulting symptoms. It is believed that sufferers of Fibromyalgia may have a lower pain threshold and, so, exhibit additional sensitivity and discomfort in response to stimuli.
Read more about Fibromyalgia.
Interstitial Cystitis (also known as painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS)), is a chronic condition of the bladder in which pain and discomfort persist in the bladder for a considerable length of time (six weeks or more) without the presence of an infection or other identifiable cause.
Read more about Interstitial Cystitis.
Rheumatoid Arthritis is a chronic systemic autoimmune disease that attacks the body's synovium, a thin membrane surrounding the joints. As a result, fluid accumulates in the joints, causing joint pain and systemic inflammation. Over time, the inflammation thickens the synovium, which may eventually invade and destroy the cartilage and bone within the joint. The tendons and ligaments that hold the joint together weaken and stretch as the joint loses it's shape and alignment.
Read more about Rheumatoid Arthritis.
Crohn's Disease is a chronic condition in which the immune system targets the intestinal tissue because it cannot tell the difference between body tissues and foreign tissues. Crohn's Disease affects the intestines and is closely related to Inflammatory Bowel Disease. Any area of the intestines can be affected. As such, the immune system irritates the intestines and thickens the intestinal wall, which leads to major gastrointestinal issues.
Read more about Crohn's Disease.
Ehlers-Danlos Syndrome (EDS) is a chronic disorder that affects the body's connective tissues, leading to problems with skin, muscles, and joints. It results from a genetic mutation that interferes with the body's ability to produce collagen, a protein that gives connective tissue (ligaments, tendons, skin) its elasticity and strength. This interference leads to stretchy skin and flexible joints beyond the typical range of motion. It can also lead to chronic pain due to brittle bones, joint looseness, and cardiac distress.
Read more about Ehlers-Danlos Syndrome.
Mental illnesses are medical conditions that disrupt a person's thinking, feeling, mood, ability to relate to others and daily functioning. Mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life. Mental illnesses are serious medical illnesses. They cannot be overcome through "will power" and are not related to a person's "character" or intelligence.
Mental disorders include:
- Anxiety disorders
- Mood disorders
- Psychotic disorders
- Personality disorders
- Eating disorders
- Sleep disorders
- Impulse control disorders
- Gender identity and sexual disorders
- Substance dependence disorders
- Dissociative disorders
- Developmental disorders
- Conduct disorders
- Somatoform disorders
- Factitious disorders
Read more about Mental Illnesses.
Some Common Symptoms of Various Invisible Illnesses:
Each invisible illness presents with individual symptoms, but there are a few that may be universal to several of the illnesses.
- Chronic pain
- Chronic fatigue
- Diarrhea or loose bowels
- Joint pain or chronic discomfort
- Sensory sensitivity
- Emotional exhaustion
- Sleep or appetite changes
Not all chronic conditions present with the same symptoms, or at the same degree. Milder complications may require slight adjustments to lifestyle, while severe cases may require bigger sacrifices to daily activities.
How are Invisible Illnesses Diagnosed?
Once upon a time, women with invisible illnesses were considered to be suffering from hysteria, and were diagnosed as such. They were then given the prescription of "resting" and were put on bed rest.
It is sadly common for a patient with an invisible illness to see several medical professionals before receiving a proper diagnosis. Because these illnesses are not readily seen, many doctors may dismiss initial symptoms as an overreaction or even hypochondria. Many patients have reported being dismissed as simply depressed when reporting chronic pain or fatigue.
One of the most important things to remember about invisible illnesses is this: if you feel that you are not receiving a proper diagnosis from your doctor, it is wise to seek a second opinion from another medical professional.
For some conditions it can take years to be properly diagnosed.
Once you find a doctor who can pinpoint the source of the symptoms, proper treatment can begin and will often involve seeing a specialist. This can unfortunately be a very taxing process, which only adds to the initial frustration of attempting to receive a proper diagnosis.
Read more about the definition of Hypochondria.
Read more about the definition of Munchausen Syndrome.
Read more about the definition of Munchausen by Proxy.
Treatment for an Invisible Illness:
Invisible Illnesses are typically chronic by nature, and often incurable. Therefore, treatment is extensive and ongoing and often aimed at managing symptoms. It is not uncommon to have regular doctor visits as often as monthly or weekly for maintenance care. Patients often have several doctors who are specialists in the various sub-conditions that can develop from the parent illness.
Treatment will vary based on the condition, but some of the specialists may support care for:
- Pain management
- Therapy, both physical or mental
- Migraines and chronic headaches
- Specific condition care as needed
- Alternative medicine
How to Help Yourself if You Have an Invisible Illness:
Advocate for yourself. Learn everything you can about your condition, and help spread the word. Help teach your loved ones about your condition, and what your limitations are. Sometimes it's hard to ask for special treatment, but it's important for your well being to do so when you need it.
Be clear about how friends and family can assist you, and don't be afraid to ask for help when you need it.
Find a support group, either in person or online. A support group can offer much needed information, and a sense of community. Take a family member or friend with you. Support groups are for everyone, including the loved ones of those with the condition.
Accept that there will be people who do not understand, or may not believe you. There may be a point where you simply cannot talk about your condition with that person. That's okay. Not everyone will be able to deal with or understand an invisible illness. That is why support groups are so important, at least in the beginning.
Read more about How to Cope With Chronic Illness.
What Is A Spoonie?
Speaking of support groups, what is a Spoonie? I've heard the term, but what does it mean? The term spoonie was first coined by Christine Miserandino when her friend prompted her to explain what it felt like to have Lupus. They happened to be in a cafe at the time, so Christine grabbed the nearby spoons to use as an example. For each activity in the day you had to give up a spoon, but the key was to reserve enough spoons to make it through the day.
Using this analogy, someone who is not sick can begin to understand what it is like to live with an invisible illness. The term spoonie is now used on social media for people to seek out others with similar conditions or needs. The spoonie community is strong on social media, and can be quite useful for someone with an invisible illness regardless of what stage they are in.
While the term spoonie is generally used in social media to refer to physical invisible illnesses involving painful conditions, some networks also use it for mental invisible illnesses as well. The concept behind reserving your spoons could apply in both physical and mental situations.
Additional Resources for Invisible Illnesses:
Invisible Disabilities Association provides information for patients with an invisible illness.
Invisible Illness Week is a website detailing the National Invisible Chronic Illness Awareness Week.
Mayo Clinic is a nonprofit worldwide leader in medical care and research for people from all walks of life. Their mission is to inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research.
US National Library of Medicine is the world’s largest medical library on the National Institutes of Health campus in Bethesda, Maryland. The Library holds a collection of materials and research on all areas of biomedicine and health care.