When Shame Is a 'Sub-Symptom' of Your Illness

I think anyone who has or has had any kind of chronic illness knows about the feelings of shame that can accompany chronic illness. Shame is kind of like a sub-symptom of the conditions or a side effect of living in a world where invisible conditions exist.

My conditions are all invisible. Unless someone sees me pass out, groan or moan a little on my way upstairs, or sees me out and about with my emotional support animal, no one would know I’m any different – that is, until you get to know me.

I follow a gluten-free diet. I don’t do it for fun or for fad. I never expect people to accommodate it and often come prepared either having already eaten, or with a some kind of gluten-free granola bar. Many people are so kind and try to accommodate it and make sure that something is available to me. It means the world to me. I know that it’s not always easy and often takes extra time and forethought, and sometimes extra cost. Unfortunately, there’s been a few people who make sure that they let me know exactly how much extra time and how much more expensive it was, and how much more of a hassle it was. With an attitude like that, I’d rather they didn’t even do anything. I never ask anyone to accommodate me. It leaves you feeling pretty terrible for even being there at all…let alone eating their food.

There’s also the shame that is accompanied when the “healthy appearing” 20-something is choosing to sit in a chair when there is work that needs to be done or when there are older people that may need to be seated as well. The looks of disdain that have been flashed my way are enough to sometimes keep me standing up and nearly passing out or pushing myself a little too far. I hate that someone would think that I’m so selfish that I wouldn’t give up my seat or help out with work that needs to be done.

Then there’s the juggling act that comes with trying to keep your daily schedule from people who don’t understand your illness. The feelings of shame that accompany having to lay down after your showers. The head-hanging loneliness that comes with having to rest in the middle of the day because you were up doing regular everyday things. The feeling of shamefulness that comes from planning in “rest days” to your week, knowing that if you spend too many days in a row up and about that you will spend twice as many days in bed paying for it.

The shame will eat you alive if you let it.

When the rude, mean, or unthoughtful comments get said about my illnesses, I begin to wonder if that’s what everyone thinks, and someone finally got brave enough to voice it. It’s so hard for people to understand things they can’t see. As someone who deals with chronic illness, I have a few choices in dealing with the shame and the pain of people not understanding.

1. If someone is choosing to help me, that is their choice and I shouldn’t feel bad if they are choosing to help me or show me love. If they are choosing to have a bad attitude about it, that is their attitude to answer for, not mine.

2. If someone is choosing to judge me without knowing me, that’s also not my responsibility. If sitting down or resting is what’s best for my body, then that’s what I need to do.

3. I believe that God doesn’t hold me accountable for a healthy person’s schedule. God doesn’t expect me to do all the things a healthy person does. He made me. He knows me. He knows what I can handle and what I can’t. It’s OK to have limitations.

If you have a chronic illness I hope this helps you put your feelings of shame in perspective a little bit. If you know someone with chronic illness I hope that this maybe helps you see inside their mind and understand a little better what they’re going through. Maybe even let them share their story with you!

“If we share our story with someone who responds with empathy and understanding, shame can’t survive.” – Brené Brown

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