How to Support Those with Invisible Illnesses

Imagine suffering from debilitating chronic pain. Every step you take causes discomfort, and it’s perpetually at the forefront of your mind. The internal battle you’re fighting takes mental and physical energy and just going through daily tasks can be debilitating. However, those looking at you may have no indication you’re suffering, let alone that you have a chronic disease. You suffer from an invisible illness.

What is an invisible illness?

An invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders. Many of these conditions deeply impact the people suffering, but show no obvious signs to an outside observer.

By 2020, the US Department of Health and Human Services estimates that 157 million Americans will be afflicted with a chronic illness and the US Census Bureau estimates 96% of chronic illnesses are invisible. Invisible illnesses disproportionately impact women and many are not yet well understood by health care providers or the general public. This lack of understanding inevitably contributes to feelings of isolation and hopelessness for those suffering from such conditions.

Common Invisible Illnesses

A vast majority of chronic illnesses are invisible. Some examples of invisible illnesses include:

• Allergies and food intolerances
• Arthritis, especially rheumatoid
• Cancer
• Chronic Fatigue Syndrome
• Fibromyalgia
• Depression and mental illness
• Diabetes
• Digestive disorders such as Celiac, colitis, and irritable bowel syndrome (IBS)
• Migraine and headache sufferers
• Heart conditions
• Lupus
• Lyme Disease
• Multiple Sclerosis
• Infertility
• Sjogren’s Syndrome

Simply because external observers can’t see symptoms of these very real illnesses, they may be less empathetic and understanding of the people suffering from them. In a series of focus groups conducted in 1999 by the National Pain Foundation (NPF), lack of validation (belief the patient was suffering what the patient said they were suffering) was identified as the most significant challenge faced by people in pain.

Challenges of Living with an Invisible Illness

In addition to the various symptoms of a chronic and invisible illness, people suffering from these illnesses can also experience frustration, guilt, exhaustion and embarrassment.

For those diagnosed with an illness at a young age, the common stereotype that younger populations are supposed to be healthy makes it especially difficult. For those diagnosed later in life, many feel guilty they are unable to more actively participate in the lives of their families and be active with their children and grandchildren.

Invisible illnesses impact people in all aspects of their lives, personally and professionally. They can severely impact ability to routinely work and may lead to social isolation and depression.

Common Misconceptions

Nearly all of those experiencing an invisible illness have to deal with common misconceptions regarding their condition. Here are just a few of those most frequently dealt with.

• The way a person looks reflects how they’re feeling physically. Someone may look healthy, but that doesn’t mean they are.

• Invisible illnesses are ‘all in the person’s head.’ Keeping stress at a minimum may reduce symptoms of a chronic illness, but it doesn’t mean the root cause of the disease is psychological.

• Resting up will make people feel better. Just as people not suffering from chronic or invisible illness are unable to bank sleep (rest for a long period of time in order to recoup or “make-up” sleep or to expend extra energy), neither are those with chronic illnesses. The same amount of rest leading up to different events, on different days, may not yield the same results, as symptoms ebb and flow, often unpredictably.

• If a person suffering from a chronic illness is enjoying themselves, they must feel ok. Don’t assume a person who’s enjoying themselves, laughing, and participating in activities is symptom-free. Many people have learned to cope with their symptoms to participate in important events and activities, but that does not mean they are feeling well.

• Stress reduction techniques are a cure for chronic pain and illness. While these techniques may assist with symptom relief, they are not a cure-all.

• Being home all day is a dream lifestyle. Being home all day, but in constant pain and suffering from an invisible illness does not make for a dream lifestyle, regardless of location. Many people are often couch-bound or bed-bound due to extreme pain. They also experience boredom, as not being able to actively participate in the world around them can be frustrating and disappointing.

• Those in chronic pain are ‘drug seekers’. People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication.

How to Support Others with Invisible Illnesses

If you know someone with an invisible illness, there are several things you can do to support them. It’s important to remember everyone wants to enjoy life and no one wants to be a burden; however, people suffering from chronic and invisible illnesses do appreciate your support and understanding.

• Accept you are powerless to make them better. Your love and understanding are what they need.

• Take time to talk to them and learn about their illness. Ask questions about symptoms and treatments, and be patient. The more you learn, the better you’ll be able to understand and show empathy.

• Be with them when they need it and give them space when they want it. Many chronic illnesses become socially isolating, as people are house-bound or lose companions due to the lack of understanding around invisible illnesses. Being around and accessible may be one of the best support methods available.

• Try not to get frustrated. One of the biggest challenges associated with invisible illnesses is you get sick and then you continue to get sick, the cycle does not stop. At times, this may get frustrating to care givers and it’s important for them to realize it’s normal for people suffering this way to be emotionally needy, distant, angry, or sad.

The experts at NWPC specialize in the care and treatment of a variety of invisible illnesses. For resources, support, and additional information, we’re here to help.