As the founder of mental health awareness organization The Invisible Illnesses, Emily Torchiana has found that explaining invisible illnesses to others is now second nature. Torchiana travels the country speaking about her experiences with cyber bullying, a suicide attempt, and mental illnesses, all of which give a voice to the invisible.
“Our slogan is ‘Just because you can’t see it, doesn’t mean it’s not there.’ You can’t see depression, anxiety, or other mental illnesses physically, but that doesn’t mean they don’t exist,” Torchiana tells Talkspace.
Torchiana’s motivation to share her own mental health journey largely stems from her desire to help others feel less alone as they face criticism from others, who can’t see that they’re suffering.
“Just because symptoms aren’t physically there when looking at a person struggling does not mean they are not struggling internally,” she adds. “I wish people understood that there’s more to a person than what you see physically.”
Through her advocacy work, Torchiana puts words to what we don’t typically acknowledge — that mental illnesses are invisible illnesses.
What is Invisible Illness?
An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others — but also mental illnesses. Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be “making up” your suffering.
Unlike having a condition that’s observable, those with invisible illnesses often face a lack of social awareness and additional stigma, As a result, these individuals often face more skepticism, and are accused of being lazy or moody and in need of cheering up, going out more, calming down, or a host of other dismissive judgements.
To complicate matters, like many chronic conditions, mental illnesses tend to ebb and flow in severity — some days, weeks, and months go really well, and during others it’s difficult to work, socialize, and function, confusing those who can’t “see” why one day is good and another a challenge.
“The problem is that when I share that I am suffering from a mental illness, people will often respond with, ‘But you were fine yesterday,’ not realizing that my mental health can fluctuate,” Zachary Philips, a mental health advocate and writer, shares.
While this makes explaining an invisible illness to others difficult, it’s often necessary to gain needed accommodations at work or home, proper medical care, support, and understanding. It can often feel difficult to know when to disclose specific information about your personal life, particularly experiences that may feel raw or painful to talk about, like living with mental illness.
How to Explain an Invisible Illness
On the most basic level, a shortcut to help others get it right away is to compare a mental illness to a visible physical ailment and the challenges those disabilities present. For most people with little personal mental health experience, the relation to a tangible physical ailment will help them make the connection.
“Everyone understands why a person in a wheelchair can’t reach the top shelf and no one expects him/her to,” Natasha Tracy, speaker and author of Lost Marbles: Insights into My Life with Depression & Bipolar, tells Talkspace. “But with an invisible illness, there are many things we can’t do and yet society always expects us to do them anyway. I can’t reach the top shelf but people don’t see it so they don’t get it.”
Similarly, for those who don’t understand that a mental health issue also requires real medical treatment and often can’t be addressed with simple lifestyle changes, the comparison to a physical sickness or ailment can be helpful.
“You would not tell someone with the flu to fix it themselves,” asserts Torchiana. “You would tell them to go to the doctor, take medication, and so on. It should be similar with invisible illnesses — you should not assume people should fix these illnesses are their own.”
Other comparisons can also help people get it. For example, Tracy suggests trying a comparison to something equally invisible but hard to dispute.
“You cannot see gravity, but we are all subject to it,” Tracy says. “Invisible illnesses are just as real as gravity.”
The Importance of Being Candid
These basic explanations of the effect of a mental health condition will help others get a clue pretty fast, but may only be a conversation starter. For friends and family or even in workplaces where we make a bigger investment, it might be wise and even necessary to explain mental illness on a more personal level.
Where safe and comfortable, get candid with people in your life about your experiences. Especially for those who don’t have any first-hand knowledge in mental health, hearing your story can be eye-opening. Clue friends in on the full-body experience of a post-traumatic stress disorder flashback or the disorienting lost time associated with dissociative identity disorder. Having a personal connection with your experience can help others become more empathetic to your needs on good days and bad.
Consider providing additional literature and reading materials for trusted people in your life on your conditions. They can get familiar with the symptoms and treatment process for mental illness while seeing it’s definitely a legitimate condition that affects millions around the globe. Point them in the direction of more personal stories you love that help illustrate your experience. This is especially helpful if sharing your own mental health journey feels too vulnerable.
Explaining a very personal invisible illness on a deeper level can be a challenge. It’s not always easy and it takes a certain amount of courage.
“Unlike many physical issues, it is not immediately obvious what I need, or that I need anything — I have to tell you,” explains Phillips. “This process is terribly embarrassing as it forces me to constantly explain to people that I am suffering.”
The Future of Invisible Illness
As we move toward reducing the stigma of invisible illnesses, these conversations will become easier, and hopefully unnecessary, one day in the future. Getting there starts with doing the hard work of educating those around us — by sharing our own stories.
“By talking and sharing about our invisible illnesses, we can allow people to better understand what we’re going through,” Torchiana says.
Phillips, who has a Share Your Story component on his own website to increase awareness about mental health, agrees.
“I believe that by sharing our stories we can help to overcome some of the stigma that exists in society,” says Phillips. “By expressing what the reality of life is like with a mental illness, people will be able to see beyond the stereotype. Sharing will help other people to feel safe enough to speak out and seek help for themselves.”
“All of us with invisible illnesses need to band together to make these illnesses seen and be taken seriously,” echoes Tracy. “If all of us stand together, we make the invisible, visible.”
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