Disabled and Disbelieved: People with invisible illnesses still aren’t taken seriously.
Invisible disabled people still experience considerable social stigma in modern society. Although online awareness is on the rise, communities still face backlash by able-bodied people who are uncomfortable with the way some people express themselves.
When I walk into a room, I appear to people as a healthy woman in my 40s. What is not apparent is all the pain that I manage every day, having been diagnosed with depression, anxiety, CFS, PTDS and Fibromyalgia.
We have all seen it! Someone pulls into an accessible parking space, “jumps” out and dashes into the store. It is obvious they are not disabled, they are just in a hurry and being quite lazy! It makes us angry, because not only is it illegal, but it is immoral to steal the spaces from those who actually need it!
Sometimes we even see someone park there who has a legal placard, window plaque or license plate. Nevertheless, it seems evident that they must be using someone else’s permit because they certainly do not “look” disabled! Otherwise, how else would they have an accessible parking license? Despite the facts, when most people think of a disability, they picture in their minds a person with a visible, obvious impairment. Our visually oriented society may not take the time to look beyond appearances. People tend to believe what they see; and if it can’t be seen, it simply doesn’t exist.
We often do not realize that a person can have hindrances that come from the inside and may not be visible on the outside. In other words, they can have a physically limiting illness or injury, even though it is not obvious to the onlooker. Their limitations may be disabling, but because their symptoms can seem unapparent to most, we call them, “Invisible Disabilities.”
Their limitations may stem from such illnesses as Fibromyalgia, Lupus, Lyme Disease, Multiple Sclerosis, Reflex Sympathetic Dystrophy, Myalgic Encephalomyelitis (ME), Crohn’s Disease, Cystic Fibrosis, or a host of many others. Even so, they may have debilitating pain, fatigue, weakness, dizziness and/or cognitive impairments from a diseased spine, organs, heart, nervous system, cells or an autoimmune disorder that keeps them from being able to function at a normal level. Alternatively, they may have debilitating pain from an injury to their back, head, spine or another part of their body that limits their ability to work or even complete daily tasks.
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.
My condition can be summarized by chronic pain, all-consuming fatigue, sensory overload, numbness and tingling sensations throughout the extremities, IBS, restless leg syndrome, sleep problems, emotional and mental distress, and stiffness. It also makes it difficult to stand or sit for long periods, as well as bend down and lift heavy objects. This condition which regularly prevents me from doing even the most mundane tasks - is never going away. It takes me from hope to despair some days.
Living with fibromyalgia is like having the check engine light on all the time in your car. My nervous system constantly malfunctions. It feels like waking up every day with the flu. I climb one set of stairs and my body reacts like l've climbed Mount Everest. But physically, I look fine.
I am not alone in experiencing this type of stigma. It is estimated that fibromyalgia affects 900,000, approximately 3% of the Canadian population. Fibromyalgia is often called the "invisible disease" and is an officially recognized disease by the World Health Organization (WHO), the Canadian Rheumatology Association, the Canadian Pain Society, and the American College of Rheumatology.
What is the cost of telling someone, “You don’t look sick”? It’s not what you say, it’s what the person hears. Every time someone say those words to me, I heard, “I don’t hear you, I don’t see you, and what you say doesn’t mean anything to me.” It is cruel and unfair.
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