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What is an invisible illness? -

Invisible illnesses affect the way someone lives their life, but the symptoms generally can't be pointed out just by looking at a person.

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How are invisible illnesses diagnosed? -

Perceptions that chronic invisible illnesses are not valid disabilities may, in part, stem from the fact that many of these illnesses cannot be diagnosed through blood tests or biopsies.

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Who do invisible illnesses affect the most? -

Invisible illnesses, such as myalgic encephalomyelitis (ME), Lyme disease, lupus, and fibromyalgia, tend to affect women more frequently than men.

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Who do invisible illnesses affect the most? -

Not only do invisible illnesses disproportionately affect women, but medical professionals also treat them differently compared to men. A study by the Journal of Pain found that when male and female patients complained of the same level of pain, observers noted the women were in less pain.

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Who do invisible illnesses affect the most? -

Implicit bias and racial disparities mean receiving a diagnosis and support for an invisible illness is incredibly difficult for black people and people of color. A 2016 study found many white medical students wrongly believe black people have a higher pain tolerance than white people.

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Who do invisible illnesses affect the most? -

Black people and other people of color are more likely to receive poorer quality care and experience increased barriers to accessing care for visible illnesses, let alone invisible conditions.

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Types: Neurodiverse conditions -

Neurodiverse conditions, including ADHD, autism spectrum disorders, dyslexia, dyspraxia, and dyscalculia, are often invisible illnesses.

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Types: Mental illnesses -

Mental illnesses are entirely invisible. One in four people in the US are living with a mental health condition. Common mental health illnesses include anxiety, depression, bipolar disorder, and schizophrenia.

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Types: Women's health and fertility conditions -

Many women's health and fertility conditions are unseen. For instance, around five million women live with endometriosis (which can cause chronic pain) in the US.

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Types: Chronic pain -

Chronic pain is often misunderstood, especially fibromyalgia, a chronic pain disorder that affects around four million people in the US.

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Types: Chronic fatigue -

Chronic fatigue is also misunderstood by healthcare professionals. It is extreme fatigue that lasts for at least six months and can cause worsened physical and mental health.

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Types: Epilepsy -

Epilepsy is classed as an invisible illness. Around 3.4 million people live with epilepsy worldwide, and it's not apparent whether a person has epilepsy until the onset of a seizure.

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Types: Brain injuries -

Symptoms of traumatic brain injuries (TBI) often go unseen and unrecognized.

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Types: Cancers -

Some cancers are visible (either from the symptoms of treatment or the disease itself). However, many cancers fall under the invisible illness category. Malignant tumors can grow up to a decade undetected.

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Types: Autoimmune disorders -

An autoimmune disorder happens when the body's immune system attacks itself by mistake, destroying healthy tissue. Common and often invisible autoimmune disorders include Celiac disease, type 1 diabetes, and Chron's disease.

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Types: Chronic migraines and headaches -

Chronic migraines and headaches are invisible illnesses that can impair a person's ability to function.

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Not all invisible illnesses are equal -

Diabetes, heart disease, and cancer may be considered invisible illnesses, but the limitations caused by these conditions are generally not questioned. However, this is often the case with fibromyalgia or chronic fatigue syndrome sufferers.

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Stigma -

Invisible illnesses are largely stigmatized, with many holding negative attitudes and beliefs that those living with chronic pain are exaggerating the severity of their condition or that those with chronic fatigue syndrome are lazy.

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The spoon theory -

Christine Miserandino, a woman living with lupus, developed the spoon theory in 2003 as a way to help those who don't live with an invisible illness understand what it's like to live with a chronic unseen condition.

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The spoon theory -

The spoon theory is a metaphor that asks people to imagine they have one spoon for everything they need to do in a day. Those with invisible illnesses have fewer spoons than those without and need to be careful how they use them (i.e. expend their energy).

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How to cope with having an invisible illness -

Women, in particular, must be their own advocates when it comes to invisible illnesses. If something doesn't feel right, don't ignore it—speak with a doctor.

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Record your symptoms -

Keep track of the type, duration, and circumstances of symptoms, and be specific about the location of pain if you have it.

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Ask for a second opinion -

Getting a diagnosis may take time. If someone dismisses you, find another doctor to examine you.

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Compile your records -

As you begin to see healthcare providers, request clinical notes, lab results, and imaging studies from your appointments to be sent to doctors ahead of time.

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Speak to others about your invisible illness -

Have open conversations with your family, friends, and colleagues about your health. They may ask questions about your invisible illness, and you may need to educate them.

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Find support groups -

Find online or in-person support groups to help you navigate life with an invisible condition.

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Consider seeing a therapist -

Seek out a mental health professional experienced in treating patients with an invisible condition. They can help you take care of your mental health while you manage any physical symptoms.

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Protecting your sense of self -

Debilitating symptoms may have a significant impact on your hobbies. It's important to seek ways to maintain enjoyment in ways that better align with your circumstances, for example, listening to audiobooks if reading is no longer an option.

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Practicing self-compassion -

Self-criticism is common when dealing with a chronic illness, but it's important to be kind to yourself and accept that there will be ups and downs.

Sources: (BetterUp) (Health.com) (Psychology Today)

See also: These celebrities live with chronic illnesses

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