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Hidden Out of Sight; Invisible Disabilities

August 04, 2022
by Autumn Wurtz, ECDS Intern

 

Hello Everyone,

 I wanted to start by letting you guys know a little bit about who I am as a writer. My name is Autumn Wurtz, I am going into my fourth year at Ferris State University. I am majoring in Social Work with a minor in Public Advocacy, and soon to add Criminal Justice. I have a few other characteristics/ things that define who I am in a significant way, I have a focus on the Education Counseling and Disability Services, due to what challenges I have come across in my life and definitely during my time at Ferris. It has helped me find my way over some of the obstacles I face day to day, especially on campus.

 I have a wide range of health conditions and health complications, a few of them are postural orthostatic tachycardia syndrome (POTS), which is a condition that affects the blood flow and the heart rate spikes and falls when going from sitting positions to laying positions to standing or upright. I am working on the diagnostic process of getting diagnosed with Ehlers Danlos Syndrome (EDS), which is a collegian protein deficiency resulting in hyper flexibility, vascular issues, and other symptoms. I have gastritis which is where the lining in my intensities and stomach is inflamed 24/7 and gets worse with stress/anxiety. I was diagnosed with anxiety and obsessive-compulsive disorder along with being tested and proven to have dyslexia. These affect me in physical and mental ways every day. 

These conditions sometimes rule my life and make it hard to go about my day-to-day tasks depending on how bad my flare-ups are that day. Due to these obstacles, I have to be extra careful with how I take care of my body and how I go about deciding what activities I can handle doing. This long list is hard to juggle sometimes but at the end of the day, it is what makes me who I am. For me, the hardest part about constantly being in pain, is I have to be mindful of if my body can handle it. I can’t be spontaneous with my choices because sitting in a car for too long, walking for too long, and standing for too long, all affect my body significantly. For example, I would love to be able to get up and go for a walk with my boyfriend and dog, however, I have to think about the weather (cold, or too hot), how much pain I am in, and what I have to do the next few days, and what I have eaten/ drank that day. All of those factors and more contribute to deciding what I will/can do. The weather and food/water, affect my heart condition, and the other factors are due to my chronic fatigue and inflammation. You are unable to see the majority of these conditions and wouldn’t know I have them by looking at me. This is a major part of my story and a key reason I am going to be discussing the topic of invisible disabilities.  

Invisible disabilities can be defined in many ways but in simple terms “it is a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker “, (2021) This is a loosely defined blanket term to catch many different disabilities, impairments, or medical conditions. A few can be autism, dyslexia, mental health-related conditions, seizure disorders, chronic pain/fatigue, traumatic brain injury (TBI), and any other organ disorder. These impairments/disabilities along with others can not be seen most of the time, this leaves many challenges for the people affected by them. 

It leaves them in a limbo place where they must advocate for themselves due to them being “forgotten” due to them being “Out of sight, out of mind.” There are many challenges related to what they go through daily due to people not being able to see the conditions, to help relay the importance of advocating for those groups. They don’t only face everyday side effects and challenges such as fatigue, dizziness, shortness of breath, along with cognitive delays/impairments. These disabilities are more common than most are aware of, according to CDC 61 million people have a disability throughout the United States. Roughly 10% of them have an invisible disability, however, the hard part is getting those to identify with an invisible disability. For example, in our society, it is easy for doctors or others to think people are faking it or wanting attention when their disability isn’t visible. Only 3.2 percent self-identify as having a disability to their employers. 

Out of many disabilities some of the most common are learning disabilities, those with learning disabilities may not know they have them. Depending on how the school and family treated learning disabilities, some people never get tested. For example, a learning disability can make reading and writing extremely difficult. This makes comprehending what you are reading or being taught to do more difficult than others. Some schools and parents will label children as lazy, or not as smart as the rest, without thinking about why the student may be struggling.  

Another common but misunderstood invisible disabilities are psychiatric disability. They make up a large number of invisible disabilities. Many people wouldn’t think of mental health as an invisible disability; however, it can be just as debilitating and sometimes more debilitating than others (Disabled World, 2022). 

Furthermore, it is easy for people to ignore what people are saying when they can’t physically see a problem, this can result in people with invisible disabilities not speaking up for what accommodations they may need. Some with invisible disabilities have “good” and “bad” days, meaning some days will be harder for them to do or accomplish things. Whether it be the brain not wanting to connect that day, or someone’s condition acting up and causing them to be more impaired that day. This will also make it more difficult for others to understand, especially if one day you can do something then the next you are not able to, can be hard and complicated to have others wrap their heads around. From a personal perspective, going up and down with a disability can be mentally and physically draining, due to not understanding why one day I can walk 3 miles and then later that week I won’t be able to get off the couch. It isn’t easy for those with these disabilities to fight for themselves due to constantly being beaten down by ourselves, and those around us. 

Now that we know a bit more about the conversation and topic of Invisible Disabilities, I want to shift the conversation over to, Why is it important to advocate for those with Invisible Disabilities? Here are a few reasons, with the consent expansion of education and being able t save those people who once wouldn’t be able to live with the conditions, the number continues to grow of those with invisible disabilities. However, with the numbers growing, there is still little to no legislation or workplace policies in place for those with these conditions. With this being true, it makes it harder and harder for people to disclose the disabilities they face. We live in a society that is taught to work hard and keep our heads down and our mouths shut. It is hard for some people to admit they need help, especially with no visible signs. Disclosing a disability can result in negative retaliation rather than positive. For example, disclosing a condition doesn’t only affect that person, it affects how others view and think of them. It can also be more difficult to disclose if a person gets diagnosed at their current workplace. People are concerned they will be open to discrimination and judgment by those around them, especially referring to if people believe it is true. 

How can you help? Stay educated and up to date on what is happening in the disability community. There are many websites and forms online, that people can go and sign to help push new legislation. Bring up conversations at workplace meetings about how the company can improve inclusion for those with disabilities. Being okay and open to having an uncomfortable conversation about what challenges people face with invisible disabilities. You can help but be prepared to correct and educate others on their ignorance about the topic at hand. For example, it can be as simple as changing the wording and being more mindful of what words you are using. This can be changing disabilities, to abilities to no longer focus on what people cant do, rather than what they can do. People can also sign forms and post things on social media to spread awareness. Along with sharing resources for those who may need them.  At the bottom of this page, you will see two websites that have further information and resources for those interested. 

Resources

Invisible Disability Project

Invisible disabilities Association

‘Disables’, Just #SayTheWord

Citations

Connell, W. (2022, May 14). Home. Invisible Disabilities® Association. Retrieved July 6, 2022, from https://invisibledisabilities.org/

Daisy. (2020, September 14). Five things you didn't know about invisible disabilities. Access Living. Retrieved July 6, 2022, from https://www.accessliving.org/newsroom/blog/five-things-you-didnt-know-about-invisible-disabilities/#:~:text=Invisible%20disabilities%20are%20common,of%20those%20are%20invisible%20disabilities.

Disabled World. (2022, April 7). Invisible disabilities: List and general information. Disabled World. Retrieved July 6, 2022, from https://www.disabled-world.com/disability/types/invisible/

Disrupting the silence. Invisible Disability Project. (n.d.). Retrieved July 6, 2022, from https://www.invisibledisabilityproject.org/

Eisenmenger, A. (2020, September 14). Five things you didn't know about invisible disabilities. Access Living. Retrieved July 6, 2022, from https://www.accessliving.org/newsroom/blog/five-things-you-didnt-know-about-invisible-disabilities/#:~:text=Invisible%20disabilities%20are%20common,of%20those%20are%20invisible%20disabilities.

Rosen, P. (n.d.). Invisible disabilities in the Workplace. Understood. Retrieved July 6, 2022, from https://www.understood.org/en/articles/understanding-invisible-disabilities-in-the-workplace

Solomon, A. (2020, July 10). What happens when you're disabled but nobody can tell. The New York Times. Retrieved July 6, 2022, from https://www.nytimes.com/2020/07/10/style/invisible-disabilities.html

World Health Organization. (2021, November 24). Disability and health. World Health Organization. Retrieved July 6, 2022, from https://www.who.int/en/news-room/fact-sheets/detail/disability-and-health