Table of ContentsView AllTable of ContentsDiagnosis DifficultiesIllness TypesImpactsCoping With

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Table of Contents

Diagnosis Difficulties

Illness Types

Impacts

Coping With

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An invisible illness is a health condition that isn’t outwardly visible but can limit or challenge a person in some way.They includechronic medical conditionswith debilitating pain and fatigue, such as myalgic encephalomyelitis (chronic fatigue syndrome), lupus, fibromyalgia, and Crohn’s disease.Mental health disordersoften fall into this category as well.

People with invisible illnesses can look healthy on the outside, leaving them to deal with friends, family members, and even medical practitioners who question whether they are truly sick. Here we explore why these conditions are so hard to diagnose and the impacts they can have, as well as how to cope with an invisible illness.

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Difficulties in Diagnosing an Invisible Illness

People with an invisible illness likely know all too well how difficult it can be to get a diagnosis. Many of these conditions cannot be identified 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 experiencing.Getting this diagnosis requires seeing a physician who understands the condition, who listens to the patient, and who believes what the patient is telling them.

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 roughly 6.5 years.

The good news is that awareness is being raised in medical communities about invisible illnesses.This can lead to faster diagnosis.

An invisible illness can make it difficult for a person to live a full and productive life. So, despite these strides, it can be beneficial to seek out second and third opinions when experiencing chronic symptoms with no explanation and no diagnosis.

Types of Invisible Illnesses

Invisible illnesses can be physical, cognitive, or mental and encompass a wide variety of conditions.

Physical Illnesses

Many autoimmune diseases fall under the umbrella of invisible illnesses, several of which are still very misunderstood and often misdiagnosed.Chronic pain is also commonly associated with invisible illnesses, as well asenduring fatigue.

Examples of medical conditions that are often invisible illnesses include:

Cognitive Disorders

Several cognitive or brain-based conditions are invisible due to a lack of any outward or visual symptoms.Among them are:

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Mental Health Disorders

Many psychological conditions also fall under the umbrella of an invisible illness.They include:

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Impacts of an Invisible Illness

It’s not uncommon for people with invisible illnesses to face bouts of depression and anxiety.Dealing with a chronic condition can be painful and isolating and we are allowed to have big feelings about that. These big feelings can sometimes cause us to experience a dip in mood.

The Spoon Theory

This theory asks people to imagine having to give a spoon for everything they do on any given day, like:

Spoon theory suggests that most healthy individuals have more spoons than they need to get through 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.

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

An invisible illness can make it difficult for a person to live a full and productive life.

Coping With an Invisible Illness

Living with an invisible illness can be difficult. Here are a few ways to cope.

Find Community Support

Invisible illness awareness is growing every day not just in medical communities, but in society as a whole. There areonline support groups, Facebook communities, and other resources available to help navigate even the worst days with an invisible condition.

There are also healthcare providers who understand, care, stay up to date on the latest research and advancements, and want to help in whatever ways they can. Reach out to these individuals for support.

Get a Referral

Individuals who don’t currently have a care provider who understands these illnesses can benefit from asking others for a referral. Everyone deserves a doctor who believes them, who cares about them, and who wants to help them preserve as many spoons as they can.

Consider Seeing a Therapist

One of the best things we can do for ourselves is toseek out the help of a mental health professionalwho is experienced in treating patients with an invisible illness. These professionals can help us find ways to optimize our mental health, which can also allow us to achieve the best results possible for our physical health.

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8 SourcesVerywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Invisible Disabilities Association.Invisible disability.National Institute of Arthritis and Musculoskeletal and Skin Diseases.Fibromyalgia: Diagnosis, treatment, and steps to take.Gendelman O, Amital H, Bar-On Y, et al.Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care.Best Pract Res Clin Rheumatol. 2018:32(4):489-499. doi.10.1016/j.berh.2019.01.019AMA Journal of Ethics.Invisible illness and measurability.Sloan M, Harwood R, Sutton S, et al.Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.Rheumatol Adv Pract. 2020;4(1):rkaa006. doi:10.1093/rap/rkaa006Sowińska A, Pezoa Tudela R.Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations.Int J Qual Stud Health Well-being. 2023;18(1):2221905. doi:10.1080/17482631.2023.2221905Brennan K, Creaven AM.Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.Qual Life Res. 2015;25:1227-1235. doi:10.1007/s11136-015-1151-zSpears Williams J.Chapter 17: Utensils and fire. In:Redefining Disability. 2022:146-151. doi:10.1163/9789004512702_025

8 Sources

Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Invisible Disabilities Association.Invisible disability.National Institute of Arthritis and Musculoskeletal and Skin Diseases.Fibromyalgia: Diagnosis, treatment, and steps to take.Gendelman O, Amital H, Bar-On Y, et al.Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care.Best Pract Res Clin Rheumatol. 2018:32(4):489-499. doi.10.1016/j.berh.2019.01.019AMA Journal of Ethics.Invisible illness and measurability.Sloan M, Harwood R, Sutton S, et al.Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.Rheumatol Adv Pract. 2020;4(1):rkaa006. doi:10.1093/rap/rkaa006Sowińska A, Pezoa Tudela R.Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations.Int J Qual Stud Health Well-being. 2023;18(1):2221905. doi:10.1080/17482631.2023.2221905Brennan K, Creaven AM.Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.Qual Life Res. 2015;25:1227-1235. doi:10.1007/s11136-015-1151-zSpears Williams J.Chapter 17: Utensils and fire. In:Redefining Disability. 2022:146-151. doi:10.1163/9789004512702_025

Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Invisible Disabilities Association.Invisible disability.National Institute of Arthritis and Musculoskeletal and Skin Diseases.Fibromyalgia: Diagnosis, treatment, and steps to take.Gendelman O, Amital H, Bar-On Y, et al.Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care.Best Pract Res Clin Rheumatol. 2018:32(4):489-499. doi.10.1016/j.berh.2019.01.019AMA Journal of Ethics.Invisible illness and measurability.Sloan M, Harwood R, Sutton S, et al.Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.Rheumatol Adv Pract. 2020;4(1):rkaa006. doi:10.1093/rap/rkaa006Sowińska A, Pezoa Tudela R.Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations.Int J Qual Stud Health Well-being. 2023;18(1):2221905. doi:10.1080/17482631.2023.2221905Brennan K, Creaven AM.Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.Qual Life Res. 2015;25:1227-1235. doi:10.1007/s11136-015-1151-zSpears Williams J.Chapter 17: Utensils and fire. In:Redefining Disability. 2022:146-151. doi:10.1163/9789004512702_025

Invisible Disabilities Association.Invisible disability.

National Institute of Arthritis and Musculoskeletal and Skin Diseases.Fibromyalgia: Diagnosis, treatment, and steps to take.

Gendelman O, Amital H, Bar-On Y, et al.Time to diagnosis of fibromyalgia and factors associated with delayed diagnosis in primary care.Best Pract Res Clin Rheumatol. 2018:32(4):489-499. doi.10.1016/j.berh.2019.01.019

AMA Journal of Ethics.Invisible illness and measurability.

Sloan M, Harwood R, Sutton S, et al.Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.Rheumatol Adv Pract. 2020;4(1):rkaa006. doi:10.1093/rap/rkaa006

Sowińska A, Pezoa Tudela R.Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations.Int J Qual Stud Health Well-being. 2023;18(1):2221905. doi:10.1080/17482631.2023.2221905

Brennan K, Creaven AM.Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.Qual Life Res. 2015;25:1227-1235. doi:10.1007/s11136-015-1151-z

Spears Williams J.Chapter 17: Utensils and fire. In:Redefining Disability. 2022:146-151. doi:10.1163/9789004512702_025

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