Thursday, March 1, 2018

13 Things People With Chronic Invisible Illness Want You to Know

Chronic illness is the Great Censor. It is such a demanding, consuming, grueling battle that the chronically ill person rarely has the bandwidth to debunk common, painful misconceptions about her and her illness.

And oh my, there are so many misconceptions about chronic invisible illness. People think chronic invisible illness is fake — a ruse to get attention or spend "quality" time in bed; they think it's mental; they think Health Warriors are lazy; they think they're prone to exaggerating their challenges, and on and on and on.

It's stunning and crazy-making how often Health Warriors have to navigate these hurtful misconceptions. You guys, there were days when I was in such a dark place that the frequent, painful accusations and pervasive lack of understanding made me want to die. And gosh — I'm hesitant to write that because of the times people have chastised me for claiming my illness could actually be serious enough to make me want to give up. These wounds run so deep.

And here is the other thing: because Health Warriors and their illnesses are so misunderstood — and because they do not have widely familiar labels like "cancer" — they are not getting the help and support they need from their churches and other communities.

Now that I am healing — now that illness is not acting as a Great Censor — I am beginning to share, on behalf of all the Health Warriors, what it is like to lose your life to chronic invisible illness, with the hope that increased understanding will mitigate the suffering of Health Warriors just a bit.

In today's video, I share 13 things people with chronic invisible illness want you to know.

If you are a Health Warrior, I hope this video makes you feel less alone and can be a resource for your communities. I know so many of you hesitate to ask your communities to try to understand your battle because you don't want to rock the boat — to cause any interpersonal tensions. Debunking stubborn misconceptions can be a real boat-rocker, I know. I rarely challenged misconceptions about my illness for this very reason.

And yet, I wish I had. I wish I had posted resources on social media, helping people understand. I wish I had emailed resources to my inner circle. I wish I had asserted myself when others imposed their misconceptions on me. I wish had been my own best advocate.

If this video captures a bit of your experience as a Health Warrior, or if you have other resources that do, I encourage you to share them, to be your own best advocate. If we are going to change painful misconceptions, then we have to be intentional about educating our communities.

If you are not sure how to share helpful resources with your community, perhaps you could share from a place of vulnerability (vulnerability can be so disarming), like this (feel free to copy and paste this):

Here is the thing about chronic invisible illness: it can cause so much shame, so much isolation, so much misunderstanding. I have often wanted to share my experience of chronic illness, but my sense of shame and anxiety about what others might think has prevented me from doing so. However, being understood mitigates some of the suffering of chronic invisible illness, so today I am trying to be courageous, and I am sharing this resource that will give you a peek into chronic invisible illness. Thank you for walking this journey with me!

And now, my friends who do not have health challenges (but who are most certainly fighting other battles): would you watch this? And then, would you be advocates for all the Health Warriors you know — and the ones you don't know? Would you share this video, or other similar resources, in your communities? Trying to understand Health Warriors and their illnesses — and helping others understand — is one of the best ways you can love them. It is salve on their many oozing wounds.

And finally, I want to thank so many of you who have been exactly what I needed in my darkest moments. I had an extraordinary number of people interact with me out of their misconceptions, but I had even more people (YOU!) extend grace, understanding, encouragement, and faithfulness in prayer. You buoyed me under the weight of all the hard stuff, and I love you dearly for it.

Here is the video (click HERE to be rerouted to YouTube):



 Fight on, all you Warriors, those fighting health battles, and those fighting other hard battles.

I'm cheering for you, Home Skillets.

-Sarah



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