What Is an Invisible Illness—and How Do You Cope?

An invisible chronic (long-term) illness is a condition that is not visible to the casual observer.1 Invisible illnesses can include conditions like chronic fatigue syndrome (CFS) and fibromyalgia. Both of these conditions can cause whole-body pain and fatigue.23 Other examples include cognitive and mental health disorders, such as dementia and anxiety disorders.1

These hard-to-diagnose illnesses often go undiagnosed for years.1 Read on to what's considered an invisible illness and how to cope with one.

Diagnosing Difficulties

Research has shown that some people don't view these illnesses as valid since they're not visible. This may, in part, be due to the fact that many invisible illnesses cannot be diagnosed by a simple blood test or tissue biopsy. Many have subjective symptoms, like fatigue, headaches, and body pain, that could signal hundreds of different conditions.4

Diagnosing lupus, for example, is challenging. There are so many ways lupus can manifest, and the symptoms may not necessarily happen all at once. People sometimes see multiple healthcare providers over many years before they receive a diagnosis.5

Types of Invisible Illnesses

Invisible illnesses are generally disorders that have symptoms others can't point out just by looking at someone. There's no strict medical definition, but these diseases can affect your ability to conduct your life as you'd like to but that you can't see.1

Many of these illnesses disproportionately affect women and create another unique obstacle: differences in the way women and men are treated. Research has found that observers often believe women are in less pain when looking at both sexes complaining of the same level of pain.6

Cognitive Disorders

Cognitive disorders are often neurological conditions that impair attention, memory, judgment, and more. Many of these disorders don't often cause physical symptoms, including:71

• Alzheimer's disease: This common form of dementia causes progressive memory loss. People with Alzheimer's disease also can have trouble with language and thinking.
• Attention-deficit hyperactivity disorder (ADHD): This condition often begins in childhood and causes hyperactivity, impulsivity, or inattention.
• Autism spectrum disorder: Those with autism can have trouble communicating, learning, and socialising with others.
• Dyslexia: This learning disorder causes trouble reading.
• Traumatic brain injury (TBI): This injury is the result of a blow to the head, such as from a car accident or contact sport.

Mental Health Disorders

Mental health disorders affect your behavior, feelings, mood, and thinking. Many of the symptoms caused by the following disorders are often not visible:81

• Anxiety disorders: These disorders often cause overwhelming feelings of fear, which can interfere with school, work, and relationships. Examples include obsessive-compulsive disorder (OCD) and panic disorder.
• Borderline personality disorder (BPD): Those with BPD can have difficulty controlling their emotions. This disorder often leads to impulsive behavior.
• Depression: People with depression often have persistent feelings of sadness or hopelessness. A low mood may cause aches, cramps, and digestive symptoms.
• Post-traumatic stress disorder (PTSD): You may develop PTSD after a traumatic event, such as a car accident, natural disaster, or sexual assault. PTSD may cause flashbacks, nightmares, and trouble sleeping.
• Schizophrenia: People with this disorder often develop hallucinations that can be auditory or visual. Schizophrenia can also cause delusions and depression.

Physical Disorders

Autoimmune disorders often cause chronic fatigue or pain that's not visible to other people. Many of these conditions are not fully understood and misdiagnosed. Some people can live with these conditions for several years before they receive a diagnosis.9

Some autoimmune disorders that might be considered invisible illnesses include:109

• Celiac disease: This digestive and immune condition damages the small intestine in response to gluten, which is found in barley, wheat, and rye.
• Chronic fatigue syndrome (CFS): This long-term illness causes severe mental and physical exhaustion. You may have symptoms like joint pain, sleep problems, and trouble thinking.
• Crohn's disease: This is a type of inflammatory bowel disease (IBD) that causes inflammation of the digestive tract.
• Diabetes: Diabetes affects the way your body controls glucose (sugar) in the blood.
• Fibromyalgia: This long-term illness causes whole-body pain, which may cause fatigue or trouble sleeping.
• Lupus: In lupus, the immune system mistakenly targets and attacks the body's healthy cells. This reaction causes widespread inflammation that can affect the skin, joints, heart, and more.
• Rheumatoid arthritis (RA): This inflammatory disorder causes painful, swollen joints in the hands and feet.
• Sjogren's syndrome: People with this disorder have dry eyes and a dry mouth, the latter of which can cause trouble swallowing.

How To Cope With an Invisible Illness

It's important for people with invisible illnesses to be their own advocates. Don't ignore symptoms if something seems "off." Here are some tips for coping with and managing an invisible illness.

Record Your Symptoms

Recording specifics in a diary is always a good idea, especially noting the location of pain if you have it. The duration of symptoms and how they occur is also important. It could be helpful to note, for example, if your symptoms flare up when you have an infection like a cold or the flu.

Compile your records as you start to see healthcare providers. Request copies of the clinical notes from your appointments, lab results, and imaging tests. Send them to a specialist ahead of time when you see one.

Seek Multiple Opinions if Necessary

Getting a diagnosis might require a second opinion. If someone dismisses you, find another healthcare provider to examine you and run the labs you need to get answers.

Try checking out message boards and forums to track down local specialists. See if there are people in your area dealing with the same symptoms. Ask if they have a healthcare provider they would recommend you talk with.

You can also use the internet to gather facts. Focus on content published by large medical schools and research universities; government health sites like the Centers for Disease Control and Prevention (CDC) or National Health Institutes (NIH) and non-profit advocacy sites.

Talk To and Educate Others About Your Health Issues

When it comes time to tell co-workers, family, and friends about your health, have conversations face-to-face. You can't control what they think, but you can educate them and offer to answer their questions. Keeping your health challenges a secret is tempting, but speaking your truth is freeing. Talking to others can ultimately help your relationships.

It's also worth connecting with people who understand your experience without any explanation. Find online communities around your condition. Just interacting with others who have what you have can make you feel more empowered and hopeful.

Impacts

Research has shown that people with an invisible illness often develop anxiety and depression. It can be difficult to cope with one of these diseases. Physical pain can often negatively impact your mental health.11

One way to understand how an invisible illness can impact someone's life is to use the spoon theory. This theory encourages you to visualise giving a spoon to each daily task, such as cleaning, going to work, and taking care of your children. People with an invisible illness often have fewer spoons than others. They must consider what or who they expend their energy on.12

It's important to support someone you know who has an invisible illness. This support can alleviate negative feelings and help those with an invisible illness feel less alone.11

A Quick Review

Invisible illnesses are those that the casual observer cannot see. You may look perfectly healthy but have symptoms like chronic pain or fatigue. Many autoimmune disorders, such as CFS, fibromyalgia, and lupus, are considered invisible illnesses. Cognitive and mental health disorders, such as dementia and anxiety disorders, are also often invisible.

Diagnosing an invisible illness can be like piecing together a complicated puzzle. It can be helpful to gather information on your symptoms and seek multiple opinions. The more pieces you have, the more complete the picture will be.

(source: Health, What Is an Invisible Illness—and How Do You Cope?, 29 June 2024)