Invisible Illness: What are they? Who is Affected? How Can I Become More Aware?
Alicia M. Held, MSW
Maybe you have read the term “invisible illness” on a friend’s Facebook feed, or have recently read an article raising awareness for those who are marginalized because they do not have a “readily visible” disability; but what really is an “invisible” illness or disability? Let’s start with the definition of disability. Merriam-Webster defines disability as a condition (such as an illness or injury) that damages or limits a person’s physical or mental abilities. The Americans with Disabilities Act uses similar language for the legal definition of disability. Neither definition mentions, though, whether a disability must be visible in order to be a “true” disability. And yet, I am fairly certain that if I asked you to close your eyes and tell me the first thing that came to mind when I mentioned disability, that most of you would respond, “a person in a wheelchair.” Or if I asked for what you picture when I say the word illness; “maybe a thinner person, with a scarf wrapped around their head, with an IV, battling cancer.” And while both of those images definitely do fit the categories of disability and illness, the breadth and diversity of people living with chronic illness and disability is so much more than a narrow stereotypical vision of physical impairment.
Invisible Illness is a term that has been used in more recent years to describe people living with a chronic illness or disability which can not be determined at first glance. I purposely say “at first glance” in stead of merely “by sight” because often the longer you know a person with an invisible illness the more ways you can see that illness affect their physical demeanor and many other aspects of their life. There are many conditions that fall into the category of invisible illness: Lupus, Arthritis, Fibromyalgia, Chronic Fatigue Syndrome, Lyme Disease, Cushing’s Syndrome, Addison’s and many more. And if you have found this community then there is a good chance that you or someone in your life is living with an invisible illness. Now, calling the above illnesses and others “invisible” in no way indicates that the people who live with these conditions do not have physical symptoms or that those physical symptoms are not sometimes readily visible to everyone. The term invisible illness derived more from the fact that to the general public, someone with one of these chronic illnesses generally does not appear “sick”, and therefore their motives for things like using handicap parking, scooters in grocery stores, or using accommodations at school or work may be called into question. As a person with an invisible illness myself, I have had all of these things and others questioned in my life because “at first glance” I do not look disabled.
Why does this matter? Well, to someone with an invisible illness it matters a great deal, and if that person is someone you care about, and even if it is not, I hope that you will still take some time to learn about why understanding of invisible illness is so important. I’m sure you have heard the cliché, “Be kind, because everyone you meet is fighting an unknown battle.” And while I generally have a disdain of chichés, I have to admit that this one hits the mark pretty well, and especially when we are talking about people with chronic illness. Every single day is a struggle for someone with a chronic illness. Often they are battling debilitating fatigue and pain and that may be before they even get out of bed! Their lives are filled with prescriptions and specialist visits, therapies and adaptive equipment, and also so often, a lack of understanding from everyone around them. Sometimes it is even difficult for family and close friends to understand how hard life is with a chronic illness especially when someone may “look so good.” (Which, don’t even get me started on how this well-meaning phrase demeans our everyday struggle.) But, then it is doubly hard for people we meet in the grocery store, at work, the bank, church, or in hundreds of places in our everyday lives to understand how standing in a line may literally cause us excruciating pain, how walking across a parking lot may fatigue us so much that we can’t even accomplish what we came for, or that sometimes even that act of trying to focus on a work or school assignment may leave us so burnt out that we need a nap. And on top of all of this fatigue and pain and cognitive and mental disturbance we are then called upon to justify to others why we need what we need, and many times made to feel ashamed in the bargain. Believe me, no one has asked for illness! For many of us illness has taken our lives in directions 180 degrees from those we had planned, and as depressing and difficult as that alone can be, the constant need to defend ourselves to our family, friends, and even prefect strangers can cause chasms of loneliness, frustration, and despair in our daily lives.
So if you love someone with an invisible illness, or you are a compassionate stranger who has wandered by this site, what can you do to support those with invisible illness? Believe them! Believe someone who says they need to use a scooter when grocery shopping, and offer to grab something on a high shelf if you see them struggling. Definitely do not reprimand them because they can “walk” so they must not “need” it and are therefore somehow stealing the resource from someone else. Believe someone when they park in a handicap spot. If they don’t put up a placard, gently remind them. I know with my memory problems that I often forget to hang my placard. If they respond that they will only be in the store for a minute and there was no other spot, then help to compassionately educate them about the necessity of those spaces for people who really do rely on their availability in order to accomplish their daily tasks. Believe your friend who has to cancel a date because of fatigue and know it has nothing to do with you. In fact, ask how you can help in those instances. Believe the loved ones in your life when they tell you about the discrimination and stigma they face everyday, and if you are in public and see someone discriminating against someone with a disability, whether it is visible or not, stand up for that person! You may just make their entire year. Finally, for those of you here with chronic illness, stand up for your rights! Continue to compassionately educate the public, even when the last thing you want to do is answer yet another question. And most of all, and the reason why we are all here, support your brothers and sisters in this fight. No one can do this alone!