Understanding Invisible Illness

May 24, 2022

Understanding invisible illnesses

Invisible illnesses are those you don't recognize easily just by looking at someone. But that doesn't mean they aren't suffering or that they don’t have limitations. Read on to understand what invisible diseases are and to learn some strategies to cope with them.

What is an invisible illness?

Data from the 2010 Americans with Disabilities Census Report showed that only about 6% of people who report disabilities use visible supports such as a wheelchair or a cane. This means that many people with disability have invisible illnesses, with no physical signal identifying their health condition.¹
They typically have chronic conditions that cause debilitating pain and fatigue, making it difficult for them to live a full and productive life.²

Examples of invisible illnesses

The following conditions can be considered invisible illnesses:^1,2

Chronic fatigue syndrome – a disorder that causes extreme fatigue that an underlying medical condition can’t explain.
Lupus – an autoimmune disease that causes pain and inflammation in any part of the body.
Fibromyalgia – a condition that causes pain all over the body.
Endometriosis – a painful condition in which the endometrium grows outside the uterus.
Multiple sclerosis – a potentially disabling disease of the brain and spinal cord.
Mental illnesses like depression, anxiety, and attention deficit hyperactivity disorder (ADHD)
Chronic obstructive pulmonary disease (COPD) – a group of conditions that cause airflow blockage and breathing-related problems.
Inflammatory bowel diseases (IBD) – chronic digestive tract inflammation.
Migraines
Celiac disease – an autoimmune disease that damages the small intestine.
Hypothyroidism – when the thyroid gland doesn’t make enough thyroid hormone.
Rheumatoid arthritis – an autoimmune inflammatory disease that affects the joints.

What happens when you have an invisible illness?

People with the conditions listed above may appear healthy even though they have health problems. So, they may face others’ judgment for parking in a spot reserved for those with disabilities.¹

Also, some doctors may take longer to diagnose some of these conditions as the symptoms are not so obvious. For instance, fibromyalgia patients wait 6.5 years on average for an official diagnosis.² Fatigue and joint pain in women can easily be confused with symptoms of hormonal changes when it could be lupus.¹

Thus, patients with hard-to-recognize symptoms frequently receive insufficient support. Therefore, it’s essential to find a specialist who is empathetic and understands that the patient is not exaggerating or making things up.¹It’s also vital to have supporting friends and family to ensure a better quality of life.

How to cope with an invisible illness?

Living with an invisible illness can be challenging. Some of the best coping strategies can be:²

Getting a referral - Asking for doctors’ referrals for people going through the same problems.
Finding community support – Joining support groups, events, or navigating online resources.
Seeing a mental health professional - Many people with invisible illnesses develop depression, anxiety, and other mental health problems. A mental health professional can help them better cope with their condition.

Things you must understand about living with an invisible illness

Living with an invisible disease can sometimes be isolating. It’s important to understand that it’s not because these people “look good” that they necessarily feel good. These diseases are painful and debilitating enough for others to cause more suffering by discrediting what they say and feel.³
If you live with someone with an invisible illness, be understanding if the person doesn't want to go out and prefers to be alone for a while, they may be in pain or not feeling well. Never say the person is lazy, dramatic, or a liar. This can hurt, and it does not help. Offer your support, and be there for them with respect and without judgment.³

References