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You don’t look sick: Uncovering and understanding invisible illness

June 29, 2022 - 17 min read

invisible-illness-woman-looking-out-window

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What is invisible illness? 

8 types of invisible illnesses 

Debunking common misconceptions about invisible illnesses 

How to support people living with invisible illnesses 

“You don’t look sick.” 

If you live with an invisible illness, you’ve probably heard this in your lifetime. From allergies to arthritis, some types of cancer to invisible disabilities, depression to diabetes, invisible illness is everywhere. 

I remember the first time I called in sick because of my endometriosis. I was doubled over in shooting pain and could barely stand. I’d tried everything to quell the pain — ibuprofen, heating pads, lots of fluids, even an ice pack. I’d already had two surgeries in the last five years to help the pain but it was only a temporary reprieve.

But as I’ve learned in the ten years since my initial diagnosis, endometriosis flare-ups happen inexplicably. And sometimes, as doctors have told me, there’s really nothing you can do about it. 

But here’s the thing: I wasn’t coughing or wheezing. I didn’t have a fever. I didn’t have a broken bone or even a doctor’s note. I didn’t have any physical or visible indicators of my illness. So, why did I feel a tinge of imposter syndrome while calling in sick?

Because my boss couldn’t “see” my illness, did that make it not real? Of course not. Would my boss (a male) be understanding of my need for a sick day? Should or could I even say what it was I was sick with? 

I could go into the complexities of women’s health issues and societal standards that played a role in the perspective of my own invisible illness. But still, the mere fact that my illness wasn’t immediately visible somehow played tricks on my own brain. 

Of the 42 million Americans who live with a severe disability, 96% of them are invisible. According to the World Health Organization, around a billion people worldwide are disabled. Invisible illnesses are anything but uncommon. 

In this article, we’ll talk about what defines an invisible illness. We’ll also talk about what types of invisible illnesses exist — and how to support the people living with them.

What is invisible illness? 

Before we go any further, let’s define invisible illness. 

There isn’t an official clinical definition of invisible illnesses. The range in types of invisible illnesses varies, from mental health conditions to autoimmune diseases to cancer. Let’s talk about some common invisible illnesses, some you might even live with yourself. 

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8 types of invisible illnesses 

There are plenty of invisible illnesses. We’ve compiled eight of just some of the more common types of invisible illnesses (but this is a non-exhaustive list). 

Neurodiverse conditions 

ADHD, autism spectrum disorders, dyslexia, dyspraxia, and dyscalculia are just some neurodivergent conditions. In fact, 1 in 7 people is neurodivergent. So when it comes to neurodiversity in the workplace, it’s likely you work with a neurodiverse person. 

These disorders are often ones that you would never visibly see. On top of the lack of visibility, people are often apprehensive about self-identifying. People with neurodiverse conditions fear the stigma associated with their diagnosis or condition. It’s incredibly important to foster a diverse, inclusive workforce for neurodivergent people. 

Mental illnesses 

Much like neurodiversity, mental illnesses are also entirely invisible. We know that 1 in 4 people are living with a mental health condition in the US. When we look at mental health in the workplace, 

Some mental health conditions include: 

  • Anxiety (including generalized anxiety disorder) 
  • Depression or major depressive disorder 
  • Bipolar disorder or other mood disorders 
  • Schizophrenia or other psychosis-related disorders 

Women’s health and fertility conditions 

There are a number of women’s health and fertility conditions that go completely unseen. Around 5 million women live with endometriosis in the US. Globally, it’s estimated that around 10% of reproductive-aged people live with endometriosis

Other people suffer from polycystic ovarian syndrome (PCOS). Others suffer from infertility, with some undergoing fertility treatments that have significant impacts on the person’s body. 

invisible-illness-woman-with-pills-on-couch

Chronic pain and chronic fatigue 

Chronic pain and chronic fatigue have long been misunderstood and understudied. People who live in chronic pain often have their pain and fatigue go unexplained. They’re at a loss for what is causing the pain yet live with aching joints, stabbing pain, exhaustion, and brain fog. 

Fibromyalgia is one such chronic pain disorder that is also referred to as widespread pain. Around 4 million people in the US live with fibromyalgia. Chronic and ongoing pain and fatigue can also spiral into other issues. Some of these issues include sleep problems, mental distress, anxiety, depression, and more. 

Chronic fatigue syndrome (CFS) is another condition that can’t be fully explained by any underlying medical condition. Essentially, it’s extreme fatigue that lasts for at least six months. Similar to chronic pain, CFS also risks spiraling into worsened physical and mental health. 

Epilepsy 

Epilepsy is another health condition that’s classified as an invisible illness. A neurological disorder, it’s not apparent whether a person is living with epilepsy or not until the onset of a seizure. Around 3.4 million people live with epilepsy worldwide.

Brain injuries 

Brain injuries are another invisible illness that goes unseen and unrecognized. For example, people who suffer from traumatic brain injuries (TBI) often silently suffer the consequences. 

My husband suffered a severe traumatic brain injury from an accident. He requested certain accommodations during law school (like extra time on tests, a dedicated study room, and more) to help curb the impact of the TBI on his performance. But the important thing to note is that those suffering are often the ones to speak up about what they need because of the invisibility factor. 

Cancers 

While some cancers are visible (either from the symptoms of treatment or the disease itself), many cancers are not. One study found that malignant tumors can grow up to a decade undetected. While tumors are growing, people can still suffer the symptoms of cancer. And with progressive medical care, not all treatments for cancer are visible. 

Autoimmune disorders 

Autoimmune diseases are also often invisible illnesses. With more than 80 types of autoimmune disorders, there are plenty of diseases that impact our global population. 

An autoimmune disorder happens when a body’s immune system attacks its own immune system by mistake. Instead of destroying unhealthy body tissue, it destroys healthy body tissue. Some common autoimmune disorders are included below: 

  • Multiple sclerosis 
  • Rheumatoid arthritis 
  • Type 1 diabetes 
  • Lupus 
  • Anemia 
  • Grave’s disease 
  • Celiac’s disease 
  • Crohn’s disease 
  • Hashimoto thyroiditis 

These invisible diseases often don’t come with the validation that other visible diseases receive. This can be really challenging from an emotional health perspective. However, there are often many support groups for those with invisible illnesses. It’s important to lean on support systems as much as possible to help share lived experiences and seek understanding. 

invisible-illness-man-talking-to-doctor

Chronic migraines and headaches 

Chronic migraines and headaches are other examples of invisible illnesses that cause impairment to a person’s ability to function. 

Migraines and headaches can be debilitating. If you’ve ever suffered from a bad migraine, you know the impact it can have on your well-being. It’s more than a simple “my head hurts.” It can cause vision impairment, nausea, and fatigue. Now, imagine living with chronic headaches and migraines every day. It certainly has a big impact on a person’s quality of life — yet it’s completely invisible. 

Debunking common misconceptions about invisible illnesses 

There’s a general lack of understanding of invisible illnesses. First, there’s stigma. Many people who live with an invisible illness are fearful of labeling. There are misconceptions and stigma surrounding many invisible illnesses on top of the lack of visibility. 

For example, let’s say that Mary lives with chronic migraines. She posts on your team’s Slack channel that she needs another day off this month due to her migraine. Her boss, Tom, is starting to doubt whether Mary is sick or not (even though Mary regularly delivers on her work, even with her sick days). 

Or let’s say Alex lives with endometriosis. They decided they need to have another surgery to help quell the pain that they live with on a monthly basis. But weeks leading up to the surgery, Alex needs weekly afternoons off for routine ultrasounds, scans, bloodwork, and more. Alex’s teammate, Marta, doesn’t understand why Alex can’t simply “deal with their period cramps.” After all, Marta gets period cramps and just takes ibuprofen to handle them. 

There are examples of stereotypes and stigmas that surround certain invisible illnesses. With a lack of understanding of the impact of invisible illnesses, it’s easy to jump to conclusions. But that’s dangerous for the psychological safety and well-being of your workforce

Now, let’s add intersectionality to the conversation. When we look at communities of color and underrepresented groups, we know people from these communities are already battling stigma.

Implicit bias and racial disparities are prevalent among healthcare professionals. Back in 2005, the National Academy of Medicine released a report. This report documented that Black people are sicker and have shorter life spans than their white counterparts, finding that racial and ethnic minorities receive lower-quality healthcare than white people. 

Racism still lurks in today’s healthcare system. One 2016 study found that many white medical students wrongly believe Black people have a higher pain tolerance than white people. This study found that a whopping 73% of medical students held at least one false belief about nonexistent biological differences between races.  

And beyond physical health, there are clear disparities in mental health among underrepresented groups as well. Like physical health, research tells us there are disparities when it comes to race and ethnicity in mental healthcare. People of color are more likely to receive poorer quality of care or experience increased barriers to accessing care. People of low socioeconomic status are estimated to be two or three times more likely to have a mental health condition than those of high socioeconomic status. 

invisible-illness-older-man-looking-out-window

How to support people living with invisible illnesses 

Let’s take a close look at how you can support those with invisible illnesses in your life. Here are five ways to help uncover what’s invisible: 

  • Encourage people to join a support group. For those people in your life who are living with invisible illnesses, it’s very likely they aren’t alone. If you can share in the same lived experience, consider connecting them with people who can. Encourage them to join support groups. Oftentimes, the support groups can help offer moral support, connection, and even tips on how to navigate the medical community. 
  • Lead with empathy and kindness. A little kindness goes a long way. It takes a certain level of vulnerability for someone to open up to you about their invisible illness. And with a lack of understanding surrounding many illnesses, it can be a difficult thing to share.

    Lead with empathy and compassion when a person confides their invisible illness with you. Sharing that you simply care for them can help ensure that they feel supported and loved. 
  • Be an attentive listener. Invisible illnesses are invisible for a reason: they’re hard to recognize. It makes listening that much more important when people wish to share their experiences with you. Practice your active listening skills
  • Step up as an advocate. Stereotypes and stigmas surrounding invisible illnesses are real. If you hear or know of someone bullying or talking down to a person with an invisible illness, step up as an advocate. Advocacy is one of the best tools to help combat common misconceptions people may have about invisible illnesses. 
  • Drive awareness and education (and break down stigma). Lastly, advocacy and awareness go hand-in-hand. Educate yourself on invisible illnesses, especially how they disproportionately impact different communities. Seek to understand illnesses that you might not understand right now. And help others understand, too. Together, you can help drive awareness and break down stigma

When it comes to coping with an invisible illness, BetterUp can help. A coach can help guide you through your journey, from how to handle the workplace to managing your mental fitness. 

With access to virtual coaching, you can take control of your future. And no matter what struggles you're facing, building your mental fitness is an investment in you. 

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Published June 29, 2022

Madeline Miles

Madeline is a writer, communicator, and storyteller who is passionate about using words to help drive positive change. She holds a bachelor's in English Creative Writing and Communication Studies and lives in Denver, Colorado. In her spare time, she's usually somewhere outside (preferably in the mountains) — and enjoys poetry and fiction.

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