Our invisible lives: The damaging effects of being disbelieved

When I was young, my mother repeated the adage, “never judge a book by its cover.” It wasn’t until my early 30s that I fully understood the axiom’s meaning. Prior to my diagnosis of hypermobile Ehlers Danlos Syndrome at 26, peers used terms like “bendy,” “double-jointed,” “gross,” “freaky,” and “rubberwoman” to describe my loose joints. It didn’t help that I used my arms as a skipping rope (dislocating my shoulders before slipping them back in) as a party trick.

Since I looked healthy and happy on the outside, few understood that something was wreaking havoc on my digestive system, hips, ankles, ribs, knees, elbows, and yes, those skipping rope shoulders. When I bailed on plans due to exhaustion, lost weight from digestion issues, and resorted to crutches after an injury sustained from merely walking barefoot, people looked at me skeptically, some accusing me of being an attention-seeker. My illness was invisible, which meant the “real” me was, too.

Being misjudged is a common occurrence, especially with people putting themselves out there on social media. But miscalculation takes on a whole new level when someone struggles with an invisible illness. In addition to our family members and peers mistaking us for untruthful hypochondriacs, many of us have suffered invalidation by health care professionals. As if living with chronic pain wasn’t discouraging enough! While demoralizing, the negative effects of being misbelieved can also lead to mental illnesses and worsened symptoms.

Health care professionals often dismiss patients with invisible illnesses

A study on the effects of “dismissing chronic illness” in patients with invisible illnesses discovered that over half of the participants had their symptoms dismissed by a health care provider.  When looking for a diagnosis for their conditions, multiple patients were told their symptoms were “imagined’’ and should be blamed on depression. According to this study, which was published in Health Care Women International, one patient was told, “stop reading stuff on the internet, you are a full blown hypochondriac.”

Sound familiar? Sadly, this is a common occurrence for many with EDS, which is why diagnosis can take anywhere from 10 years to decades. This tendency for physicians and society at large to dismiss a person’s symptoms can make living with any type of condition insufferable at times. We shouldn’t have to prove that we’re sick to get help.

Feeling invalidated can cause mental illnesses and worsen symptoms

According to recent research, being disparaged and disbelieved can lead to depression, anxiety, loss of identity, low self-esteem, and isolation. That’s not hard to believe if you’ve been on the receiving end of invisible illness gaslighting (i.e. when a health care professional or society member dismisses a person’s symptoms). It feels horrible to have your symptoms discounted merely because they aren’t visible.

Researchers from the University of Exeter Medical School found a link between a doctor’s “nocebo” response (i.e. when the physician makes a patient feel misunderstood or disbelieved) and heightened anger and distress. Another review study published in Disability and Rehabilitation found that patients whose symptoms were invalidated were less likely to seek pain management therapy and rehabilitation. Not surprisingly, patients are less willing to look for help when they’ve been put down or mislabeled. The fear of being discriminated against is powerful enough to keep some of us at home.

Being disbelieved can lead to isolation

Feeling isolated is common in people suffering from chronic illnesses, found UK researchers. According to their study, chronic pain patients feel shame and humiliation after having their symptoms dismissed. They’re often stigmatized as being lazy, untruthful, and heavy complainers, making it easy to understand why they may hide their symptoms and prefer to sequester themselves.

If you’ve ever felt like you had to prove your disability, you aren’t alone. Society still lags when it comes to ending prejudice surrounding invisible illnesses. Whether you’ve been accosted while parking legally in a disabled parking spot, questioned about your need to wear a brace, or approached by a “friend” who thinks your needs are too high-maintenance, discrimination comes in many forms. Until we can make headway in educating communities about what EDS is and how it impacts our lives, we’re bound to keep feeling devalued and alone.

It’s time for society to heed my mother’s advice and avoid judging someone when unaware of their full story. As Zebras know well, invisible illnesses come in all shapes and sizes. Even those diagnosed with the same disorders can suffer differently, so instead of jumping to conclusions ormaking a snarky comment, treat others with kindness. If they ask for help, give it. If they complain about stabbing pain in their hip, listen. You definitely can’t judge a Zebra by their cover but you can certainly make their lives less challenging by offering support and belief.

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References:

1. Ehlers-Danlos Syndrome Clinic. (n.d.). Where can I get an Ehlers-Danlos diagnosis? Retrieved from https://www.eds.clinic/articles/where-can-i-get-an-ehlers-danlos-diagnosis
2. Dolor. (n.d.). Impact of disbelief on chronic pain (UK review). Retrieved from https://dolor.org.co/biblioteca/articulos/Impacto%20incredulidad%20dolor%20cronico.pdf
3. University of Exeter. (n.d.). The nocebo effect and its implications (Title). Retrieved from https://news-archive.exeter.ac.uk/featurednews/title_432073_en.html
4. Pituitary World News. (n.d.). The importance of being believed. Retrieved from https://pituitaryworldnews.org/the-importance-of-being-believed/
5. Whelan, C., & Brown, P. (2017). Chronic pain and mental health: Understanding the connection. Journal of General Internal Medicine, 32(5), 559–564. https://doi.org/10.1007/s11606-016-3953-6
6. Thomas, S., & Brown, A. (2019). Impact of patient perception in fibromyalgia. Arthritis Research & Therapy, 21(1), 135. https://doi.org/10.1186/s13075-019-1925-6
7. Chronic Illness Inclusion Project. (2018, January 27). On not being believed. Retrieved from https://chronicillnessinclusion.org.uk/2018/01/27/on-not-being-believed/
8. Jackson, M., & Fiddler, M. (2019). Healthcare experiences of invisibly ill patients. Health Care Women International, 40(7), 756–771. https://doi.org/10.1080/07399332.2018.1489106