What Is an Invisible Illness?

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While there is no one accepted medical definition of what an invisible illness is, these are generally chronic conditions with debilitating pain and fatigue symptoms that can’t be easily recognized just by looking at someone.

Examples of invisible illnesses include myalgic encephalomyelitis (otherwise known as chronic fatigue syndrome), lupus, fibromyalgia, and Crohn’s disease. Many autoimmune diseases fall under the umbrella of invisible illnesses, and several are still very misunderstood and often misdiagnosed.

These conditions can make it difficult for a person to live a full and productive life. Chronic pain is commonly associated with invisible illnesses, as well as enduring fatigue.

Many patients with invisible illnesses look healthy on the outside, leaving them to deal with friends, family members, and even medical practitioners who question whether they are truly sick.

This article covers how an invisible illness is diagnosed, types of invisible illnesses, and provides ways to cope and live with one.

Diagnosis

If you have an invisible illness, you likely know all too well how difficult it can be to get a diagnosis. Many of these conditions can not be diagnosed with a simple blood test, and often require the process of elimination and a patient’s reporting of symptoms for a diagnosis to be made.

Fibromyalgia, for instance, is diagnosed almost entirely based on a patient’s explanation of the symptoms they are dealing with. Getting this diagnosis requires seeing a physician who understands the condition, who listens to you as a patient, and who believes what you are telling them.

An Invisible Illness Can Take Years to Diagnose

Unfortunately, far too many patients with invisible illnesses have come to learn that finding that trifecta in a physician can be like finding a needle in a haystack. It’s one of the reasons the average diagnosis period for fibromyalgia, from the time a patient first presents to a doctor with symptoms to the time they receive an official diagnosis, is 6.5 years.

Unfortunately, far too many patients with invisible illnesses have come to learn that finding that trifecta in a physician can be like finding a needle in a haystack. It’s one of the reasons the average diagnosis period for fibromyalgia, from the time a patient first presents to a doctor with symptoms to the time they receive an official diagnosis, is 6.5 years.

The good news is that awareness is being raised in medical communities about invisible illnesses, and patients are receiving diagnoses faster today than ever before.

Despite these strides, it's still a good idea to seek out second and third opinions if you are experiencing chronic pain and fatigue symptoms with no explanation and no diagnosis from the doctors you have disclosed your symptoms to.

Types

Because there is no one accepted medical definition of invisible illness, there is a long list of conditions that may count as such. If you have a condition that interferes with your daily way of life, but others have commented that you “don’t seem sick” in the past, you probably have an invisible illness.

Still, some commonly recognized invisible illnesses include:

  • Rheumatoid arthritis: An autoimmune condition where the immune system attacks the joints. Symptoms include debilitating pain and joint damage.
  • Chronic fatigue syndrome: A condition of unknown origin that can cause fevers, sore muscles, and prolonged periods of exhaustion.
  • Fibromyalgia: A chronic condition with symptoms of musculoskeletal pain and fatigue.
  • Diabetes: A disease that inhibits the body’s ability to produce and respond to insulin properly.
  • Celiac disease: A hypersensitivity to gluten that produces an immune reaction and can result in damage to the small intestine.
  • Lupus: An autoimmune condition where the immune system attacks the body’s tissues and organs, to include the joints, skin, blood cells, and brain.
  • Sjogren’s syndrome: An autoimmune disorder impacting the eyes and mouth.
  • Migraines: Recurrent headaches that can result in nausea and impaired vision.
  • Crohn’s disease: An inflammatory bowel disease marked by severe abdominal pain, diarrhea, scarring of the intestines, and fatigue.
  • Depression and anxiety: Mood disorders that can inhibit a person’s ability to leave their house and engage in everyday activities, and that can result in physical symptoms such as headaches, digestive problems, and sleep disturbances.

Impact

Having an invisible illness can impact a person’s ability to live their lives the way they otherwise would. Even on days that aren’t marked by pain and chronic fatigue, people with invisible illnesses often have limited reserves and have to be very careful in deciding what to spend their energy on.

The Spoon Theory

If you’re part of the invisible illness community, you may have heard of the Spoon Theory, originally developed by Christine Miserandino (a woman living with Lupus) in 2003.

The spoon theory is a way of talking about the impact of invisible illnesses so that people who don’t have those illnesses may be able to better understand. It asks people to imagine having to give a spoon for everything they do on any given day like:

  • Going to work
  • Engaging in a meeting
  • Playing with your kids
  • Making dinner
  • Washing the dishes
  • Even taking a shower
  • Having coffee with friends

According to the theory, most healthy individuals have more spoons than they need to get though any given day. But people with invisible illnesses have a very limited number of spoons, and they have to be careful how they use them because once they’re out, they’re out.

If you only had 10 spoons, what would you use them on?

That is the impact of invisible illnesses. There are only so many spoons to spare, and some days there are even fewer than others. On those days, you might find yourself having to stay in bed when you would rather be spending time with friends. Sometimes, there just aren’t enough spoons to give away.

Coping

There’s no doubt that living with an invisible illness is difficult. Not only are the symptoms painful and exhausting, but the lack of spoons can leave you feeling isolated and alone.

Find Community Support

It doesn’t have to be that way, though. Invisible illness awareness is growing every day not just in medical communities, but in society as a whole. There are online support groups, Facebook communities, and resources available to help you navigate even the worst days with your invisible condition.

There are also doctors who understand and care; medical practitioners who are staying up to date on the latest research and advancements and who want to help in whatever ways they can.

Get a Referral

If you don’t currently have a doctor who fits that bill, find one. Ask for a referral within the invisible illness community and look at online reviews. You deserve a doctor who believes you, who cares about you, and who wants to help you preserve as many spoons as you can.

Keep in mind, it’s not uncommon for people suffering from invisible illnesses to also face bouts of depression. It makes sense; dealing with a chronic condition is painful and isolating and you are allowed to have big feelings about that. Big feelings that may sometimes cause you to experience a dip in mood.

Consider Seeing a Therapist

One of the best things you can do for yourself is to seek out the help of a mental health professional who is experienced in treating patients with chronic conditions. These professionals can help you find ways to optimize your mental health, which can allow you to achieve the best results possible for your physical health.

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  1. Choy E, Perrot S, Leon T, et al. A patient survey of the impact of fibromyalgia and the journey to diagnosisBMC Health Serv Res. 2010;10:102. Published 2010 Apr 26. doi:10.1186/1472-6963-10-102