Tuesday, May 8, 2018

Lyme Disease Awareness Month: Appearances

It's Lyme Disease awareness month, and since so many of my readers deal with Lyme and dozens of other similar, horrific illnesses, I want to bring awareness to chronic invisible illness in general. I will be writing posts weekly for the rest of the month to help combat common misconceptions about people living with chronic invisible illness.

I hope many of you can share these posts on your social media to raise awareness about the hidden, grueling, and isolating battles caused by Lyme, CFS, CIRS, Fibromyalgia, POTS and so many more insidious illnesses.

One of the Health Warrior's most difficult challenges is navigating the common, noisy misconceptions others have about their illness. Today I want to debunk the fallacy that if they don't seem sick, they probably aren't.

Don't let the way Health Warriors look and act fool you; they have become experts at masking their suffering.

It is essential that people with chronic invisible illness occasionally have social interaction, because without time up among the living, it is hard to go on living. In order to make a couple hours of social interaction possible every now and then, the Health Warrior must rest for days, or weeks, before and after the event.

In order to avoid creating a spectacle at the event, the Health Warrior must pretend to feel much better than she does; if she were to act the way she feels, she would punctuate party conversation with weeping and whimpering in the fetal position. She probably doesn't want to unmask her suffering for a few reasons: 1) People have accused her of pretending to be sick to get attention; 2) In the past, when she has let others see her suffering, they have responded to her with indifference, skepticism, or painful platitudes (e.g., "Just think positive thoughts to make it go away"); 3) She feels embarrassed or ashamed of her challenges.

So she pushes ahead, acting with great skill and looking pretty good (one of the features of chronic invisible illness is just how outwardly 'invisible' it is). However, she often suffers a lot of backlash for any social outing. Since others can't see her physical suffering or the grit and rest required to leave the house, it is easy for them to assume that she isn't as sick as she says she is. But she needs people to believe her. She needs them to grieve with her, advocate for her, and pray for her. Her community is integral to her physical, spiritual, emotional, and mental healing.

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Are we friends on Instagram and Facebook yet?!

© by scj

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