By Lydia Aimone, member of the Anti-Stigma Project
When I walk into a room, I appear to people as a healthy woman in my 20s. What is not apparent is all the pain that I manage every day, having been diagnosed with depression, anxiety, and chronic Lyme Disease. While one of these is a physical illness and the others are categorized as mental illnesses, one thing that they have in common is that they are invisible: no one would be able to tell what challenges I face unless I were to disclose them. On any given day, I may have physical joint pain that prevents me from sitting for long periods of time, or a depressive episode that exhausts me to the point where I cannot think straight. People tend to doubt the reality of things that they cannot see, so these symptoms or their severity are often called into question. If you look fine, you are fine. This assumption leads to erroneous conclusions that 1) you are not working “hard enough” to push through symptoms, 2) you are making up symptoms as excuses to avoid responsibilities, or 3) your symptoms are your fault, either because of bad choices or because there is something inherently wrong with you. The result of that stigma is harmful on many levels, including exacerbating symptoms, creating barriers to success in relationships and vocation, and even impacting one’s identity and self-worth.
I am not alone in experiencing this type of stigma. It is estimated that about half of Americans suffer from at least one chronic condition, and that 96% of those with chronic health conditions have an invisible illness (Thiery, 2013). While there is a significant lack of data regarding how many of those individuals have experienced stigma, the internet is home to countless personal accounts of how discrimination has affected the lives of those living with invisible disabilities. This stigma pervades numerous areas of people’s lives, including relationships, education, healthcare, and employment. Difficulties most often arise because of assumptions people make based on their perceptions of how you appear or their expectations of how you should act.
People with invisible disabilities often struggle to create or maintain relationships. This is partially because keeping up a social life while managing symptoms can be draining, and also because the need to put self-care before socializing is often not understood. It can be difficult to make plans in advance due to the fluctuating nature of the symptoms of many chronic illnesses. Friends can become frustrated with the need to cancel plans to manage symptoms, with some people going as far as blaming the person with the illness because they mistakenly assume that they have control over a physical or mental symptom (Shepell, 2018). It is not uncommon for people to avoid relationships with people with chronic health issues, sometimes because they are afraid of becoming a caregiver, and other times because they do not want to be tied to someone who could interfere with their level of activity (Fortenbury, 2013). There is the dilemma of whether or not to disclose the illness, and when and how to share that information in a new relationship. They may fear that the information could be overwhelming, drive others away, or uncover hurtful stigmatizing beliefs about their diagnosis.
The dilemma of disclosure is very prevalent in employment settings. While some employers may be understanding of your situation, others may treat you differently because of the stigma related to a diagnosis. The Americans with Disabilities Act states that employers must provide accommodations to individuals with disabilities, whether invisible or not (ADA, 2008). Some employers, however, are hesitant to make accommodations because they do not want to be viewed as giving any individual special treatment. Because of this, many individuals are still actively discriminated against, resulting in things from changes in responsibilities to termination of employment. According to an article in The Guardian, “over half of disabled people feel at risk of losing their jobs and one in two have experienced bullying or harassment at work because of their disabilities,” with some feeling that they have to “work harder and longer to prove [themselves].” (Ryan, 2017). In fact, “in employment disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones” (Gingold, 2015). Employers may not be willing to offer accommodations because they do not believe the reality or severity of the illness, or may conversely relegate them to the periphery of the organization due to a fear of saying or doing “the wrong thing”. The reality is that those with invisible disabilities often have to work twice as hard, first to actually meet the job requirements, then to prove that they are worthwhile employees, and finally to be a meaningful part of the team.
The need to work twice as hard to prove your ability can also present itself in educational settings. Pursuing higher education is often daunting to people with invisible disabilities, because they fear that they will not be able to keep up or access appropriate accommodations. While there are resources for students on most college campuses, in large colleges, because of the greater student-to-resource ratio, “there are often not enough specialists, therapists and medical professionals staffed to help all of the students who need assistance and help” (Lyons, 2018). Stigma becomes an issue if a student needs an accommodation that is not typical, such as flexibility with attendance or extensions on assignments.
Stigma is especially dangerous when it impacts healthcare. People with chronic pain are often stigmatized and labeled as “drug-seekers” when in fact pain medication may be an appropriate component of their treatment. It is also not uncommon for doctors to overlook physical symptoms because they assume that what the patient is experiencing is “all in their head.” This kind of discrimination is called diagnostic overshadowing, which “is defined as a process where health professionals wrongly presume that present physical symptoms are a consequence of their patient's mental illness” (Serani, 2015). For those with multiple invisible illnesses, treatment is often a dance, since having one will always affect the prevalence of the other (Sciarappa, 2016). Stigma arises when one diagnosis is assigned blame in situations where medical professionals do not understand the connection between the two. Individuals with invisible illnesses, myself included, frequently walk out of their doctor’s office feeling unheard and judged.
There is a very good chance that you know someone who has an invisible illness, whether physical, mental, or both. This person may be a friend, partner, colleague, employer, teacher, or healthcare provider. Regardless of your relationship or their diagnosis, people with invisible illnesses need your support and respect. To help end the stigma, consider the following:
For Friends, Family, & Partners: Listen and be supportive. It is important to remember that your loved one is experiencing something that they cannot control, and that they are doing the best they can to be there for you as well. Ask them what they need, and be open to compromise.
For Employers & Colleagues: Be aware of the language you use at work. Not everyone with an invisible illness feels comfortable disclosing their diagnosis. You never know what your coworkers are going through, and how stigmatizing language will affect them. Additionally, if you are their supervisor or in human resources, be open to hearing what they need and do your best not to view their diagnosis as a weakness or their identity.
For Educators: Keep in mind the health needs of your students. If someone misses class or asks for extensions, please do not jump to the conclusion that they are avoiding work. Begin a dialogue to find out what their needs are.
For Healthcare Providers: Listen to your patients. People with invisible illnesses have probably been dealing with their conditions for a long time. They know their bodies, what has worked for them, and what has not. Partnering with your patient and combining your areas expertise can lead to better outcomes.
For People with Invisible Illnesses: As difficult as it can be sometimes, remember that your identity is so much more than your diagnosis. As much as you are comfortable with, be an advocate for yourself and for others in situations that are similar to yours. At the same time, remember that stigma is a social construct that has been developed over generations, so be patient with people as they are learning and trying to challenge their assumptions and see things more clearly. Finally, find and use the sources of support in your life, since they can have as much, if not more, of an impact on your recovery as treatment.
Changing how you view physical or mental invisible illnesses can be a very challenging task to undertake, but is vital to try. If nothing else, I hope that people reading this take away the belief that just because you cannot see someone’s symptoms does not mean they are not there. Remember that people with invisible illnesses work, sometimes twice as hard as other people, to succeed in a society that measures a person’s value by their rate of productivity. It is very frustrating that, when we need to stop what we are doing because of symptoms, we are seen as weak, lazy, unreliable, or seeking attention. Please be aware of the battles that we fight, support us where you can, and strive to challenge your assumptions about people with invisible illnesses.
Want to share these tips with others? Check out our shareable graphics here: https://www.distortedperceptions.org/articles-main/2019/11/23/tips-for-fighting-stigma-around-invisible-illness-shareable-graphics
Sources
Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (2008).
Gingold, N. (2015, March 8). People with 'invisible disabilities' fight for understanding. Retrieved from https:// www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding
Fortenbury, J. (2013, December 30). Love in the time of chronic illness. Retrieved from https://www.theatlantic.com/health/archive/2013/12/love-in-the-time-of-chronic-illness/282477/
Lyons, A. M. (2018). Invisible disabilities: Experiences of college students living with disabilities. Retrieved from http://methodandmemory.leadr.msu.edu/studentprojects/invisible-disabilities-experiences-of-collegestudents-living-with-disabilities
Ryan, F. (2017, February 21). Hidden disabilities at work: 'Every day I'm fatigued and in pain'. Retrieved from https://www.theguardian.com/careers/2017/feb/21/hidden-disabilities-at-work-everyday-im-fatigued-andin-pain
Serani, D. (2015, October 18). Depression and diagnostic overshadowing. Retrieved from https://www.psychologytoday.com/us/blog/two-takes-depression/201510/depression-and-diagnostic-overshadowing
Sciarappa, K. (2016, August 30). 6 things people should know about living with both physical and mental illness. Retrieved from https://themighty.com/2016/08/whatyou-should-know-about-living-with-physical-and-mental-illness
Shepell (2018). The everyday life of stigma. Retrieved from http://www.shepellfgi.com/managingstigma/article.aspx?aid=48&lang=1
Thiery, S. (2013, May 15). Invisible illness: Never judge what you don’t understand. Retrieved from https://blog.americanmedical-id.com/2013/05/invisible-illness-never-judge-what-you-dont-understand