What It's Like Living With An Invisible Illness

April 19, 2023

From celebrities such as Julianne Hough openly discussing her struggle with endometriosis to Lady Gaga raising awareness for her debilitating condition, fibromyalgia, it is becoming apparent many individuals struggle with an invisible illness. It is easy for many of us to judge and not be aware of the terrible pain or the struggle many endure when dealing with an illness without visible signs. Let’s break the stigma and continue reading to discover what it is like for those who live with an invisible illness and how it affects those around them.

Types Of Invisible Illnesses

Invisible illness is an umbrella term including numerous chronic illnesses showing little to no visible signs and may not be apparent to others. Invisible illnesses include fibromyalgia, diabetes, lupus, arthritis, depression, anxiety, endometriosis, irritable bowel syndrome (IBS), and many other conditions with little to no visible signs or symptoms. The invisibility of an illness presents a variety of challenges for the patient, especially when it comes to expressing the effects it can have on their daily life specifically to others who do not have the same condition.

Many individuals who live with an invisible illness find it just as challenging as those living with any other disability or chronic illness. However, those with an invisible illness often deal with far more judgment and a lack of compassion from others who believe they are not truly sick, are 'faking' it simply because they do not appear sick.

It Is More Serious Than You Think

'But you don’t look sick,' is a common sentence many individuals living with an invisible illness tend to hear from family, friends, and members of the public who do not understand the nature of the illness the individual is dealing with. It may be expressed with no ill intent or malice, however, statements provoking the idea the patient is indeed not ill or dealing with a serious condition are incredibly ignorant and undermining to the true pain and anguish many individuals deal with when living with depression, fibromyalgia, diabetes, IBS, or any other serious health condition.

This is another hurdle patients face when it comes to communicating and talking to others about their health and diagnosis, especially when trying to speak about it with loved ones who may struggle to understand the condition if they do not see the physical effects of it.

Constant Advocation

On top of already dealing with the critical side effects and symptoms of their condition, many patients also need to constantly explain and advocate for themselves as others tend to not fully comprehend something they cannot see or have never heard of before. Many will often feel they need to justify why they use disability parking, a walking cane, a walker, accessible restrooms, walk slowly, or why they’re always fidgeting and changing positions to get comfortable.

As a result, many patients will have to explain their condition and that they are in chronic pain and need to use these resources as well due to their condition and not because it is convenient or they are taking advantage of resources meant for others. This can be quite exhausting for many as they are clearly in need of such resources and should not be judged or ridiculed for its use simply because others do not understand.

Everyday Is Different

Although the behavior of those living with an invisible illness may appear difficult to fully understand, one of the biggest challenges that presents itself to a patient is the uncertainty each day brings, as each day presents unique challenges. Chronic illness is not a straight and narrow path, but rather is unpredictable and can be quite scary for those living with it on a day-to-day basis.

It must be hard to see someone looking a mess, tears falling down their face, barely able to walk, and constantly taking medication to find some relief, and then the next day is dressed with an upbeat attitude ready to take on the day as if nothing is wrong. However, many individuals will tell you it is a facade, a face they put on to face the world to make it seem like they are okay and managing their symptoms alright. They are simply trying to live in any way their bodies will let them, making each day unique and different from any other.

Education Is Key

Many of those dealing with an invisible illness find talking about their health and educating others about their condition makes it easier for others to fully understand their predicament and thus treat them normally. Patients can ask for help without feeling embarrassed or judged as others understand the reason why they may need help and why they are behaving the way they are, no questions asked.

Knowledge and understanding are essential to being able to interact with society on the same level as everyone else, and they do not want to be labeled as 'lazy' 'incompetent,' 'work shy,' or 'faking it,' which are all untrue statements when it comes to an invisible illness. Unfortunately, the media portrays individuals on benefits as 'abusing the system,' which could not be further from the truth. Therefore, many sick individuals feel the need to advocate for themselves and create their own opportunities to educate others about an invisible illness.

Why Compassion Is Essential

There are many misconceptions about the term 'invisible illness' that lead others to perceive it as not being a real thing. For those living with one, the uncertainty of being told they have something with no cure and will give them debilitating pain every day for the rest of their life can be a life-changing burden. The main thing when it comes to dealing with a friend or loved one who claims to be suffering from physical and mental chronic pain that cannot be seen by the human eye is to practice compassion to the fullest.

For instance, do not doubt their words or make light of their pain simply because you do not understand it or are not experiencing it. Allow them to express themselves verbally to let you know what their body is going through at any given moment, and those living with the condition should not be afraid to voice their pain and let those around them know what is going on with their body to help bridge the gap of misunderstanding and create a more compassionate environment for them.

What Those With An Invisible Illness Want You To Know

First and foremost, there are numerous things an individual with an invisible illness want others to know about their condition and daily life. For instance, many might have home care or a cleaner come in to help them with managing their daily lives and to get things done, as when given a choice, they would much rather spend their time and energy when they are feeling 'good' doing fun things that make their life more liveable and enjoyable. It’s difficult to live every day with chronic pain to begin with, but many of these patients would agree they prefer to explain, educate, and inform others about their condition rather than be judged or verbally challenged about their illness and needs. Simply, we all have our challenges, so rather than judge and be negative, let’s help each other through difficult times and be kinder to one another.

Although a person who does not have an invisible illness may never fully understand how those who do truly feel, with a bit of patience, less judgment, and an open mind to be educated about the condition, we can make it a bit easier for those who do live with an invisible illness.

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