Photo by Nandhu Kumar
Have you ever lied about something that was true because you were too scared or ashamed to admit it?
Did you feel that you’d be judged, ostracized, or even attacked?
We’ve all had experiences like this, luckily for most of us we get to move past these moments of shame or embarrassment.
However, persons who suffer chronic illnesses do not get that luxury.
Instead, they live in a constant state of wondering whether they’ll be judged or even believed.
So why do people with chronic conditions experience this so often?
There are many reasons, including a lack of education around chronic/invisible conditions and limited research about many rare diseases.
Many chronic illnesses do not show readily apparent signs to the naked eye (e.g., invisible disability), in fact, someone suffering from this type of illness may look perfectly fine and healthy. However, internally their body is experiencing tremendous pain and discomfort, constantly.
Illnesses such as- autoimmune disorders, auto-inflammatory diseases, and chronic lung diseases, cause substantial suffering in peoples’ mental, emotional, and physical lives. These conditions have a huge impact on the way these individuals experience their family, work, and friendships.
So, what happens when someone tries to explain their condition?
Unfortunately, what so often occurs is a dismissal of what a patient is saying or even worse an accusation.
People suffering from chronic conditions often report feelings of stress related to areas of their life such as social or work settings. At work, many people feel that if they discuss their condition they will either not be believed or perceived negatively.
For instance; as lazy, making excuses, being overly sensitive, or just downright lying. Fear of backlash causes many people (particularly women) to stay silent, so that they fit into the mold of the culture.
An example of this comes from a Hollywood female producer, she says, “…people tend not to talk about those things for fear of losing work.”
Does that sound right? Not speaking up about your health because you’re afraid of losing your job? Hardly.
The negative stigmas surrounding chronic conditions result in so many staying silent, which translates to a lack of knowledge and education about these conditions to the larger culture.
This issue also disproportionately effects women. According to Erin Migdol, many people believe things like; women are over-exaggerating their health problems, have low pain tolerances, or are hysterical. These are only a few of the negative stigmas attributed to women with chronic conditions.
These stigmas even effect people generationally. Ariel Taranski, a millennial, says she’s been stereotyped as lazy, entitled, sensitive, selfish, and coddled. Why? All because she has a chronic illness.
Obviously, the above situations are unkind and damaging to peoples’ mental health. So, what is the solution?
While there aren’t cures for chronic illnesses, patients can be treated for many of their symptoms. However, treatment is not enough. We must build a culture of empathy and education that allows people to speak openly about their experience.
For individuals with chronic conditions, it is important to develop a strong support system, to openly share and discuss experiences. Speaking with others going through similar trials is beneficial and helps relieve stress and anxiety; and creates a shared narrative to decrease isolation. This creates a network of people who can relate and empathize with one another.
Finally, it is important to educate the general population on chronic conditions to develop a culture of compassion and empathy.
One where individuals are not afraid to share for risk of losing their job, social life, or family.
Educating people about how these conditions debilitate the lives of so many in our society is a crucial step in overcoming stigma.
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References
https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=90&contentid=P01658
https://www.aarda.org/wp-content/uploads/2016/06/Adolescents-and-Chronic-Illness.pdf
https://psychcentral.com/blog/living-a-full-life-with-chronic-illness/
https://www.dawn.com/news/1435581