Sunday, May 14, 2017

The Curse of Invisible Illnesses

The hardest thing about having an invisible illness (other than coping with the illness itself) is that people do not understand the symptoms and can judge others for them. This happens even within communities of people who have the same, or similar, invisible illnesses or who are caretakers for people with them. The problem is in so many cases symptoms manifest differently for different individuals even if they suffer from the same illness. In addition to that, people expect certain behaviors and actions to mean certain things. On top of the challenge living with the invisible illness, people need to navigate the often rocky roads of social interaction that are only made more treacherous by their condition.

Invisible illnesses affect people's interactions with others on a daily basis. People who do not live with these challenges often have trouble understanding how much it can limit the person with the illness or how different that person's experience of the world is from theirs. When someone is affected more or less by their illness than another person it can change the entire experience making one person's life completely different from the life of another with the same diagnosis.

Take, for example, two individuals with Autism Spectrum Disorder. One might be non-verbal and have some mental delay, but be able to adjust to change and deal with chaos, while another could be brilliant, but meltdown over the slightest change in schedule and be unable to eat food with any texture to it. These are extremes, but you can see how the two individuals would have very little understanding of the other's struggles even though they have the same disorder. You could make the same comparisons for anxiety, depression, and even physical conditions like Chron's or hiatal hernias. While the majority of individuals will have similar symptoms those on the extremes or those with multiple conditions or complications will have very different experiences than the norm.

Society depends on social constructs. For example, white lies are considered just part of life to most people, the grease for society's wheels. “How are you?” is answered by, “I'm fine and you?” whether or not the person is actually feeling fine. How about when a person, say with autism, does not understand the concept of lying? When every answer is the straight truth? That person is thought to be rude, abrupt, and lacking in manners, maybe even self-centered, but that is just how they are. There is no intent to upset the people they are talking with. So something that sounds positive, difficulty lying, becomes something that sets the person apart from others and not in a positive way.

Most people read others' actions based on their experience of the world and within the framework of societal constructs. This works most of the time for most people until complications like invisible illnesses are thrown in. The easiest way to avoid the problems that can spring from this is to not judge, specifically to not immediately judge negatively. Consider what could cause the person to do what they are doing beyond what your knee-jerk reaction to it is. Ask them if the motivation for an action is unclear and then believe them when they tell you. Most important of all, never tell the person they do not have the challenges they say they do or place moral judgment on them for actions necessitated by their invisible illness (like canceling plans due physical or mental complications, not understanding subtle cues, meltdowns, panic attacks, etc). Dealing with the physical and emotional impact of invisible illnesses is hard, throwing in having to dodge the misunderstanding of others based on it is something most people never expect when they get their diagnosis.

There is a wonderful article, The Spoon Theory, that explains part of what living with an invisible illness is like: http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/

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