What is invisible illness and why does it matter?

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Everyone hates getting sick. Unless you consider the “perks” of a raspy voice, sleeping in all day, and flavored medicine worth all the pain, exhaustion, and inconvenience that come with illness. Regardless of where you stand, imagine being sick everyday with no end in sight. Going to work doesn’t sound too bad now? 

When you have a chronic illness, people who don’t understand it may think that it’s just an excuse to avoid responsibilities and “milk” the so-called perks of being sick. This only contributes to why many chronic illnesses are considered to be “invisible” and why so many with chronic illness feel that they are overlooked, not believed, and invisible.

Keep reading to learn about what invisible illness is and how detrimental this invisibility is to the chronic illness community. 

What is an invisible illness?

woman with chronic illness looks in the mirror and is invisible

Invisible illness is a term used to describe an illness with symptoms that are not visible to others, therefore making both the illness and the ill person feel invisible. 

There are many reasons it is called invisible illness. With symptoms that are hard to detect on the outside and symptoms that manifest themselves differently in each person, the result is a huge gray area. 

When you are sick, a doctor is expected to run tests and evaluate symptoms for treatment. However, there aren’t always simple tests for chronic illness diagnosis, so misdiagnosis is common. Is is it fibromyalgia? Depression? Chronic fatigue? Or Lyme disease? These diseases have many symptoms in common, and it is hard to nail down exactly what is wrong.

Thus invisible illness may also refer to feeling as though you or your illness is invisible because there is not a cure nor is it acknowledged by doctors. Because it is so hard to detect, the government, health care, and insurance companies don’t see it. You begin to feel invisible and forgotten by people—sometimes because of disbelief and sometimes because as hard as anyone tries to understand, they just can’t know how you feel. This leads to feeling invisible, misbelieved, and helpless. 

Mental illnesses and many autoimmune diseases fall under the umbrella of invisible illness. While mental illnesses such as depression and anxiety are considered invisible on their own, many chronic illnesses’ symptoms include depression and anxiety. This is why many doctors overlook physical diseases and chronic pain as mental illnesses instead of believing that their patient’s problems could be due to a physical problem.

What illnesses are considered invisible? 

List of invisible illnesses:

  • Chronic Lyme disease
  • Lupus
  • Fibromyalgia
  • Crohn’s disease
  • Chronic fatigue (CFS, myalgic encephalomyelitis
  • Neurological diseases
  • Some times of cancer
  • Chronic pain
  • Depression
  • Anxiety
  • The list goes on and on

Is Lyme an invisible illness?

Chronic Lyme disease is considered to be an invisible illness. Feeling helpless and invisible is very common in the Lyme community. More Lyme research is needed, and yet, funding and serious prospect for change is limited due to disbelief and skepticism around the illness. 

While Lyme symptoms are very visible in some ways, the chronic pain is usually not. Chronic illness warriors push through the pain with a smile, so it is often hard to notice that anything is wrong. Their act can be so convincing that many chronic illness sufferers have to convince others that their illness is even real.

Why is chronic Lyme unique?

There are plenty other invisible illness, but one of the unique challenges of Lyme is that chronic Lyme disease is not even considered a real disease by many doctors. People with Lyme disease are given a round of antibiotics and considered treated. Any residual symptoms are seen as a rarity and is referred to as “post-Lyme disease syndrome” for which there is no agreed upon form of treatment.

Who is affected by invisible illness?

woman's eyes are filled with tears because of chronic illnessEveryone! Everyone is affected by invisible illness in one way or another. Let us explain. If you are suffering with chronic pain, you are the one most affected. If you’re a doctor, you’ve committed to give the best care possible, and yet, you’re letting so many people suffer in silence. If you’re under the assumption that if you can’t see symptoms, someone must not really be sick, you’re doing a real disservice to everyone around you. When people are newly diagnosed with a chronic illness, wouldn’t you want them to know that there is somewhere for them to turn? 

Even though everyone is affected by invisible illness, more women than men are affected with chronic invisible illness, according to Health. We do not know why women are disportionately affected by chronic illness. Health discusses how women’s symptoms are often seen as emotional and psychosomatic instead of being given proper treatment. This contributes to the idea that chronic illness is overlooked (for both genders) because of the stereotyping around it.

Why is the title of invisible illness harmful to those suffering?

To be told that what you’re going through or feeling, is invisible can be an isolating experience.  

If you saw somebody in a wheelchair, would you tell them to “just get over it”? Would you tell someone whose arm is broken to “just push through it” and that “it will get better if you just work at it.” NO! You would understand why somebody in a wheelchair can’t just stand up. You would tell the person who broke their arm to visit a doctor and get a cast.

So why do people think it is okay to tell somebody who is depressed to “just be happy” and to “try harder” to push through bad times? Why do people continue to tell those who are chronically ill that they made it up in their head or that the pain they are feeling is just an excuse for attention?

Many who suffer with chronic invisible illness are told “but you don’t look sick.” (#butyoudontlooksick has been used over 300,000 times on Instagram) People who say this may even be trying to give a compliment saying, “You look great!” 

They really probably have  good intentions when they say you look good even though you are sick, but most of us chronic illness sufferers don’t want to hear that.

Regardless, this can be harmful because people continue to judge how you must be feeling based on how you look. This perpetuates the idea that if you don’t look sick, you must not actually be sick.

cartoon woman responding to not looking like she has chronic illnesscartoon woman says she will try to look the part of chronic illnesscartoon woman has chronic illness and implies others look stupidWilly Wonka asks what it feels like to have an invisible illness

 

So maybe it isn’t the actual title of invisible illness. Maybe it’s really just that because your symptoms are visible, your illness is deemed invisible. The constant having to convince people to help you? Treat you? Believe you? Not judge you? Yeah, that is harmful.

How to cope with invisible illness

Have a support system in place. Keep going even when it is hard. Find a good doctor. Be your own advocate. (You have to listen to your body because it’s not like anyone can see what is going on inside you. Only you know what it feels like!)

A good way to track down a good doctor is to ask on a discussion board. LymeNow has its own private discussion board for Lymies. Check it out here: https://www.facebook.com/groups/lymetalknow/

Aside from getting answers to your questions, you can connect with people who understand what you are feeling. You might just feel a little less invisible knowing there are others out there who can offer support to your pain.

How to explain invisible illness to a friend 

Make it a priority to have an open conversation about your illness with those who are close to you. They are more likely to understand if you take time to explain it to them in person. Understanding may not come easily, though.

It can be annoying or hurtful when people can’t immediately understand your pain. However, it has been considered a good way to build understanding and help others create the connection.

What can you do about invisible illness?

Keep fighting and keep spreading awareness! The reality is that you can’t necessarily change much alone. But if you have a group of chronic illness warriors behind you, the amount of change is endless. Celebrities like Selena Gomez and Yolanda Hadid have spoken out about their struggles with chronic illness to help spread chronic illness awareness. As these invisible illness cases surface more, doctors and local leaders will have no choice but to do something about it. 

This misinformation about invisible illness is not only harmful to those suffering but to society as a whole.

We encourage members of our LymeNow community and anyone who has Lyme to share their story as to spread Lyme and invisible illness awareness. As we work together with the hundreds of thousands of others who are trying to make invisible illness visible, we can change how people view chronic illness and help people get the help they need.

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