What Is Invisible Illness?
Most of the time when people hear that one of my areas of specialization is invisible illness, they express never having heard of that term before. People know about chronic illness or mental illness, but invisible illness is not something that is frequently talked about. Invisible illness is when someone has a medical condition that you can not always easily see physical signs of. These conditions include most autoimmune diseases, gynecological diseases, and some cardiovascular or pulmonary illnesses. People with invisible illnesses tend to "not look sick" and can oftentimes appear to be living a lifestyle just like someone without an illness would. You may very well know someone living with an invisible illness and not be aware of it. Unfortunately, because of the "invisibility" of these illnesses, people with invisible illness are sometimes not taken seriously or are treated as if they are making up their symptoms.
What is a Microaggression and What Does it Have to Do with Invisible Illness?
Microaggressions are indirect, subtle, and at oftentimes unintentional acts of discrimination towards a marginalized group. It is a phrase that we often hear in relation to racial bias and gender discrimination. However, microaggressions can occur towards any group that differs from the dominant cultural norm. As such, microaggressions can be directed towards people of non heterosexual orientations, people from various ethnic backgrounds, and people with certain cognitive and physical needs as well, including people with invisible illnesses.
By nature, microaggressions are difficult to identify and oftentimes people may not realize that this form of discrimination has occurred until a later point in time. Many people who live with chronic invisible illness have expressed frustration with certain comments that they frequently hear from peers who do not live with invisible illness. These same people may be unaware that these comments are even discriminatory because microaggressions occurring towards the invisible illness community is something that is not discussed much at all. However, these comments are not so different from the microaggressions that occur towards other marginalized groups. For example, a common microaggressions towards people who are Asian-American is, "but where are you really from?" This comment subtly implies that the person is not "really" American and doesn't "really" belong. A quick surface glance may make this statement seem very benign but if one listens to the deeper meanings, there is an underlying message there, which if one receives over and over again throughout time can really cause hurt and at certain times trauma.
Now think about how the following comments towards people who live with invisible illness are similar to the example just discussed.
1. But You Look Great! or But You Don't Look Sick! This comment is very often meant as a compliment or meant to make the person with the illness feel better. On the surface it appears benign or even positive, however, it is based on a very narrow understanding of what it actually means to be sick. Just as the assumption that Asian-American people "must really be from somewhere else", this comment implies that to be sick one "must look a certain way." Unfortunately this pseudo-compliment focuses on what one looks like and ignores the experience of the person living with this illness and how they may be feeling. It also raises the question of, "is this person really sick?", similar to the microaggression towards the Asian-American person, "is this person really American?"
2. At Least Its Not Cancer. It Could Be Worse! In our culture we have certain norms with which we use as standards to compare everything else to. For example, in the US we can acknowledge that the holocaust was an atrocious event. We can also speak about how slavery was a horrific thing. Both are dark and evil moments in history but there is no need to compare which was worse. However, sometimes people can fall into a pattern of comparing people's suffering and when one person is talking about a particular form of pain and another person replies with stating that another painful moment was worse, this is a microaggression. It makes the first person's expression of their experience invisible and it can feel invalidating.
These microaggressions can also occur because of a lack of understanding of what chronic illness is. Oftentimes people have an image of chronic illness as something that is very physically visible and life threatening, such as cancer. This image can at times be held as a barometer for how serious one should take another's illness. There are instances where chronic illness is indeed a form of cancer, but there are also many other types of chronic illnesses as well; however, they are usually considered to be "not as bad" as cancer. This can sometimes be true with respects to symptoms and prognosis, but not always. Regardless, this is not the point. One person's experience should not be compared to another person's in terms of which is more bad than the other. All experiences of illness are valid, and one is not worse than the other, but rather different. It can feel quite marginalizing when a person who lives with a chronic invisible illness tries to share their experience and they are told that "at least its not cancer" because it can feel like the other person doesn't really believe that their illness is a big deal. Even though it is not cancer, the person is still suffering and could really benefit from feeling heard and understood
3. "Special" Accommodations Will Have to Be Made for You Hopefully as a society we try to think about the different needs of various groups in our society. For example, during political debates there is usually a sign language translator present, or during holidays we try to recognize that different people may request non-Christian holidays off. These acts are no longer considered to be "special accommodations" but rather a normative act that is necessary so that everyone in society is represented equally. Most people can understand that not providing these options would be discriminatory.
Unfortunately people who live with invisible illness are not often considered as one of the groups in the larger pie of our social sphere, and the ways in which they are discriminated against are less apparent. All too often people with chronic illness are viewed as "complainers" in the workplace who are requesting "special" treatment and whose needs are not always taken very seriously. When a person with a chronic illness makes a request such as flexible hours, an office in a location that wouldn't require much walking back and forth, or assistance with any physical tasks, they may be seen as lazy or entitled. Accommodations for this person may be considered as "special" for this "annoying" person, lazy than just another practice necessary to ensure inclusivity in the workplace. It is easy to imagine how a person may feel if they are told that "special accommodations" will have to be made. Reading between the lines it means that one is asking for more than what should be provided for in order for there to be equity in a particular environment. Too often I speak to people with chronic invisible illness who do not even bother asking for what they need because they are afraid of being perceived as "lazy, entitled, or annoying", and of being told that the accommodations are "special" for them, or even worse being fired.
These are just a few of the types of microaggressions that people who live with invisible illness hear on a daily basis. If you are living with an invisible illness, surround yourself with people who want to understand your experience, even if they initially do not. There are people who will listen and want to learn. If you feel like you need accommodations at your place of work, ask for it, and if you believe you have experienced discrimination because of your illness, you can always consult an attorney.
If you find yourself struggling to manage your invisible illness, or have a loved one with invisible illness and are struggling to manage your feelings around this, feel free to reach out for a consultation.