Invisible Illnesses, Stigma, and What You Can Do About It

Not all illnesses can be seen

Invisible illnesses are chronic conditions that may impair a person’s normal activities of daily living yet whose symptoms are not obvious to an outside observer. According to the U.S. Census Bureau in 2002, 96% of people with chronic medical conditions live with an illness that is invisible, and about 25% of these are at least somewhat disabled by them. Some of the most common conditions include: psychiatric disabilities (such as major depression, bipolar disorder, OCD, schizophrenia, anxiety disorders, post-traumatic stress disorder, etc.), chronic pain conditions (such as fibromyalgia, migraines, various neuropathies, TMJ, etc.), Traumatic Brain Injury, epilepsy, HIV/AIDS, diabetes, asthma, Chronic Fatigue Syndrome, Cystic Fibrosis, and Learning Disabilities (LD).

All of these conditions, and many more, share the following traits:

  • The individual is in some kind of physical or emotional pain that they must cope with on a daily basis.
  • The individual did not bring the problem on themselves.
  • The disability may be managed through medication or behavioral changes, to varying degrees of success.
  • An outsider can’t “see” the disability because there are no “visible” supports such as canes, wheelchairs, or sign language use.

According to the World Health Organization (WHO) and the World Economic Forum (WEF), mental illness represents the biggest economic burden of any health issue across the globe, affecting about 450 million people in 2010 and costing $2.5 trillion at the time, primarily as a result of medical expenses and loss of work. And yet, the majority (60 percent) of that population does not receive any form of care, and the number increases to 90 percent of people in developing countries.[1] Why should this be?

In 1999, the U.S. Surgeon General indicated that stigma is perhaps the biggest barrier to mental health care, mostly as a result of social distancing, whereby people with mental issues are shunned and become isolated from others. Research suggests most people have negative attitudes based on stereotypes towards people who are mentally ill. From a young age, children will call those who are different “crazy” or “weird,” and  these terms last through adulthood. Often the stereotypes involve perceptions that the mentally ill are dangerous, a point of view fueled by media stories that paint violent perpetrators as “mentally ill” without providing the context of the type of  illness they suffer from or its degree on the broad spectrum of possibilities.

Mental health and mental illness

What’s more, unlike physical disabilities, persons with mental illness are perceived by the public to have caused their issues and feel that they should be able to control them, both of which are untrue. Most mental illnesses result from chemical imbalances in the brain, either from genetic or environmental causes, and thus are beyond the ability of the individual to manage the symptoms without medical intervention. And, unfortunately, the bias against the mentally ill is not limited simply to the uninformed. Even health care providers and some mental health professionals buy in to these very same stereotypes, exacerbating the problem.

What makes the stigma issue worse is that not only does it cause the individual to become distanced from the “normal” aspects of society, but it may also make them feel ashamed for something that is out of their control. They blame themselves, feeling “cursed” or “worthless” or think that they’re being punished for something bad, even though they didn’t do anything wrong. This may result in a “why try?” attitude that can worsen the possibility of recovery, and it may introduce other behaviors, such as avoiding people and social situations; or not disclosing the condition to employers for fear of repercussions such as job loss. It also causes large numbers of people to avoid seeking out the very treatments that will help them cope with their disability and perhaps even overcome it.

What the research says

A research review of 22 studies focusing on barriers to care of the mentally ill determined that stigma and embarrassment were the top reasons why these people didn’t stay on their prescribed medications.[2] In addition, there are wider ramifications. Buying into the stigma also complicates care when it is finally sought out, as the illness may have become more advanced, and the doctor may not fully appreciate the depth of the problem. It also minimises research funding and, ultimately, the resources available to those who need it because the numbers of disabled persons are under-reported.

So, now that we understand the enormity of the problem, what can we do to help fix it? Education is a critical first step. We need more programs that teach health care professionals to identify and manage their biases toward mental illness; this may create .the possibility of integrating mental health screening in primary care settings. The U.S. Preventive Services Task Force, in a review of 14 research studies, has determined that screening for depression in primary care settings improves outcomes.[3]

This education needs also to extend both to the general public and to the disabled population. The more people know, the less likely they are to behave inappropriately, say something hurtful, blame themselves for something they can’t control, or refuse to get much-needed help.

There’s also a lot of confusion among people who don’t suffer from chronic pain or mental illness as to how that affects a person’s life. Andrea Runyan, in her article “What do you do? Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need To?),” states that people who do not live with such conditions can become confused, having trouble believing how someone can ‘be physically able to get dressed and leave the house on one occasion but not be able to do the same on another or perform productive work in a regular job.’ She believes that, if you have a disability, it’s important to explain to others the challenges you face in life, while “still maintaining a degree of discretion.” When people try to over-explain their illness, it invariably leads to greater disbelief or even more prying questions. “Don’t assume that people will understand how certain symptoms are much worse than they sound,” she states, “and how they affect you. “[4]

The problems of mental illness and stigma are well-ingrained in our society, and there are no quick fixes for any aspect of them. However, learning more about the causes, issues involved in, and treatments of mental and other invisible illnesses will ultimately lead us all on a path to greater acceptance and health.

– Miriam Ruff, Content Creator, PoetsIN

 

Citations:

[1] Friedman, Michael. (May 13, 2014). “The Stigma of Mental Illness is Making Us Sicker.” Psychology Today Blog. Retrieved from https://www.psychologytoday.com/blog/brick-brick/201405/the-stigma-mental-illness-is-making-us-sicker

[2] Gulliver, Amelia, Kathleen M. Griffiths, and Helen Christensen. (December 30, 2010). Perceived barriers and facilitators to mental health help-seeking in young people: a systematic review. BMC Psychiatry 2010 10:113. Retrieved from https://bmcpsychiatry.biomedcentral.com/articles/10.1186/1471-244X-10-113

[3] In Friedman, Michael. (May 13, 2014). “The Stigma of Mental Illness is Making Us Sicker.” Psychology Today Blog. Retrieved from https://www.psychologytoday.com/blog/brick-brick/201405/the-stigma-mental-illness-is-making-us-sicker

[4] Runyan, Andrea, in lip magazine. (July 27, 2012).  “but, you don’t look sick! the stigma behind invisible illness.” Retrieved from http://lipmag.com/uncategorised/but-you-dont-look-sick-the-stigma-behind-invisible-illness/

 

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