Coping With an Invisible Illness

An invisible illness is a health condition that isn't outwardly visible but can limit or challenge a person in some way. They include chronic medical conditions with debilitating pain and fatigue, such as myalgic encephalomyelitis (chronic fatigue syndrome), lupus, fibromyalgia, and Crohn’s disease. Mental health disorders often 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.

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 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 as enduring fatigue.

Examples of medical conditions that are often invisible illnesses include:

• Rheumatoid arthritis: An autoimmune condition where the immune system attacks the joints. Symptoms include debilitating pain and joint damage.
• Chronic fatigue syndrome: A condition of unknown origin that can cause fevers, sore muscles, and prolonged periods of exhaustion.
• Fibromyalgia: A chronic condition with symptoms of musculoskeletal pain and fatigue.
• Diabetes: A disease that inhibits the body’s ability to produce and respond to insulin properly.
• Celiac disease: A hypersensitivity to gluten that produces an immune reaction and can result in damage to the small intestine.
• Lupus: An autoimmune condition where the immune system attacks the body’s tissues and organs, including the joints, skin, blood cells, and brain.
• Sjogren’s syndrome: An autoimmune disorder impacting the eyes and mouth.
• Migraine headaches: Recurrent intense headaches that can result in nausea and impaired vision.
• Crohn’s disease: An inflammatory bowel disease marked by severe abdominal pain, diarrhea, scarring of the intestines, and fatigue.

Cognitive Disorders

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

• Alzheimer's disease or dementia
• Attention-deficit hyperactivity disorder (ADHD)
• Autism spectrum disorder
• Dyslexia
• Traumatic brain injury
  

Mental Health Disorders

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

• Anxiety disorders
• Borderline personality disorder
• Depression
• Post-traumatic stress disorder (PTSD)
• Schizophrenia

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.

People with an invisible illness can also experience social impacts. Social support by others in the person's network is often reduced with these conditions, which can result in a lower quality of life.

Having an invisible illness can also impact a person’s ability to live their life the way they otherwise would. Even on days that aren’t marked by severe symptoms, they may have limited reserves and have to decide what to spend their energy on.

The Spoon Theory

The spoon theory was developed in 2003 by Christine Miserandino, a woman living with lupus. It is a way to help people who don’t have an invisible illness better understand what it's like to live with this type of condition.

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

• Going to work
• Engaging in a meeting
• Having coffee with friends
• Playing with their kids
• Making dinner
• Taking a shower
• Washing the dishes

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.

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 are online 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 to seek out the help of a mental health professional who 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.