Living with an Invisible Illness
Written by: Katie Lawliss, Psy.D.
October is Invisible Illness Awareness Month. In honor of this, let’s dive into what invisible illness means and work to understand how it impacts one’s lived experience.
Disabilities and illnesses can be visible or invisible. Or sometimes a combination of the two. It can be ever changing depending on how the person is feeling or progressing in their illness. Both invisible and visible disabilities have struggles associated with it. Invisible illness is exactly what it sounds like, it is a medical condition that is not visible to others. Examples of invisible illnesses include psychiatric disorders, diabetes, heart conditions, and chronic migraine. Whereas, visible illnesses have aspects of the condition that other people can see and, therefore, understand that there is a medical condition present. Examples include, someone with hair loss related to chemotherapy treatment for cancer, the use of a mobility device for someone with chronic pain, or particular facial features associated with down syndrome. This blog is focused on the intricacies of invisible illnesses, however both versions of disability and illness have valid struggles.
Whether you have a disability or not you may have either thought or heard some of these sentiments before:
A 40-something year old gets out of their car, that is parked in a handicap spot and does not use a mobility aid: “That person does not need the handicap parking space, they are not even disabled”
This person has cystic fibrosis and struggles to breath when walking the distance though the parking lot.
A 30-something year old has to cancel plans due to chronic pain and dizziness related to their condition: “He could walk yesterday, but now he can’t? He just doesn’t want to hang out with us, he always cancels.”
This person has chronic fatigue syndrome and is experiencing a crash after pushing himself through the work week.
A 20 year old woman goes to the doctor complaining of increased fatigue, joint pain, and sudden weight gain: “You look fine and are too young to be sick. Just get more exercise and watch your diet.”
This person has ovarian cancer but will not find out for over a year due to being “too young” for ovarian cancer.
A 15 year old girl is not keeping up with chores and homework: “She is just lazy and does not want to put the effort in.”
This girl has ADHD and wants to do her chores and school work but her executive functioning challenges make it so that she can’t keep up with the demands of home and school.
All of these statements are rooted in ableism and the lack of knowledge about invisible illnesses. Unfortunately, it is not an uncommon experience in the invisible disability space.
Having an invisible illness is hard. One of the reasons it can be hard is because people may not believe that you are sick and have a lack of empathy for your difficulties because they cannot see the difficulties nor experience them. It can also be exhausting to educate others and advocate for yourself so people will believe you. However, it is necessary to do so in order to have your needs met and take care of yourself. People with visible disabilities also need to advocate for themselves due to ableism in society. The difference for those with invisible disabilities is you also need to “prove” you are sick. And once you do, people may frequently forget because your illness is out of sight and out of mind to them. Although, living with the illness you do not get the luxury of your illness being out of sight and out of mind as you live with it daily.
While having an invisible disability is burdensome, due to living in an ableist society, the ability to be able to “hide” your illness can be helpful when facing prejudice and discrimination. The problem is that people with invisible disabilities are often taught to lean into this and hide their disability, which tends to cause more issues than benefits. It is important to know that having an invisible disability is valid and it is not their job to hide their disability from others in order to make them comfortable. Having a disability is not something to be ashamed of; however, being taught to hide the illness (because it is invisible) can lead to feelings of shame or lead to minimizing their needs and experiences.
Invisible illness means it is not readily visible to others. However, it does not mean that it is not valid and not visible to the person living with it every single day. Support may not be directed towards them because people can not see the need for support. This does not mean that they don’t need support. People may make accusations that they are faking the illness or not understand the variability of symptoms day to day.
It is important that if you experience an invisible illness that you can remind yourself that your disability is real and valid. Coping with the struggles that come with invisible disabilities mainly includes believing in yourself and your own experiences. If you are able to validate your experiences you can better advocate for yourself, notice ableism around you, and take care of yourself both mentally and physically. The more you are able to communicate about your experiences, even if others’ cannot see it, the more likely you are to gain understanding from your loved ones and get support when you need it.