Wednesday, May 16, 2018

Lyme Disease Awareness Month: Exaggerating

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 they exaggerate their challenges. 

When I first met my husband he asked me what it was like to be in my body. Despite the fact that my symptoms were much improved, I still struggled to describe my experience of being embodied.

There is nothing from my life before illness that I could use as a point of reference to help him understand what it feels like to have neurological, immune, digestive, and endocrine dysfunction. And I'm a words person. I taught college writing for seven years, and I love trying to put words to something especially hard to describe. I have found it impossible, however, to do anything other than minimize my experience of illness. My best guess is the Health Warriors you know are in the same boat.

I want to try to help you understand, though, because Health Warriors yearn for the understanding of loved ones. Here is a sneak peek into what it's like to be them (a heads up to my DNRS friends, I list a few symptoms below):

The suffering of the chronic illness Health Warrior is holistic — they are suffering physically, mentally, emotionally, and spiritually. Because chronic illness, and all its accompanying challenges, has wounded every part of their person, there is no facet of their existence that they can crawl into to escape their suffering.

In all likelihood, the Warrior with chronic invisible illness is depressed and suffers from severe PTSD.  It is difficult to describe what it's like to live with PTSD, but one way to think of it is to remember how your body felt when you woke up from your very worst nightmare (remember the trembling, the coursing adrenaline, the profuse sweat, the racing heart, the terror, the awful thoughts that were both frozen and racing?), and then imagine what it would be like if your body felt like that all the time, plus the relentless pain, vertigo, nausea, weakness (etc.) caused by systemic illness.

Additionally, the Health Warrior is probably in debt; cannot work or is suffering through a part-time job; cannot date, if she's single; cannot invest in her marriage, kids, and other relationships the way she wants. She has lost friendships because of the toll her suffering takes on those closest to her; she has lost her sense of dignity as she wastes away in bed; and she fights shame because of her limitations and the disappointment and doubt of others. She often feels as if she has been abandoned by God; and in all likelihood, her church is not supporting her the way she needs (more on this next week). Moreover, she cannot do anything to ease her suffering, like exercise, eat good food, go out with friends, watch a movie (lots of people with chronic illness can't process sound very well), talk on the phone, or distract herself with work.

There are a few earthly things that mitigate her suffering, though: your understanding, your compassion, your support, and your belief in her — in both her testimony of her challenges and her ability to persevere. 


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© by scj

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