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How It Feels to Lose Control With Chronic Illness

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I have gastroparesis. It’s a fancy word meaning my stomach doesn’t do its job properly (gastro: stomach, paresis: paralysis). Digestion is a long, slow and often painful process that results in constipation or diarrhea (sometimes both!), horrendous bloating, nausea and vomiting. I was diagnosed around two years ago, lost a significant amount of weight and was feeling downright miserable. Treatment options are few and far between, expensive and don’t always work or come with nasty side effects. (I’m looking at you, antiemetic medication!)

Last summer, I made a decision to leave a toxic, abusive home and move halfway across the country to stay with family and start my life over. It was one of the scariest, bravest things I’ve ever done and I’m honestly so proud of myself. What surprised me even more was that many symptoms from my chronic illnesses seemed to go dormant. For a second I thought I was cured! (My stomach and I had a good laugh at that.) But in all honesty, I think all the changes I was going  through kind of put everything on the back burner some how.

Fast forward to now where I’m mostly settled into my new life, and my gastroparesis is back with a vengeance. I’m having to relearn (the hard way) how to deal with a debilitating illness. Realizing things I once loved to eat are no longer a safe food because they make me sick to my stomach. Unsure of what “healthy” foods I’ll be able to digest easily. Hugging the toilet and crying on my lunch breaks because the pain is so intense, and then trying to pull myself together before I have to go back in to work. Sometimes I fear I appear standoffish and out of it when I’m just trying to make sure no one can tell that my insides feel like they’re being shredded into pieces.

It’s honestly depressing to watch the cycle of feeling OK-ish to feeling like a skeleton of yourself. Walking into a doctor’s appointment with hope and leaving realizing you can’t afford to do *any* of the treatment plans they’ve suggested. Never being taken seriously in an emergency room because they’ve seen you so many times and it’s just a “tummy ache.” Or being told to drink more water, exercise more and that positivity can cure your illness (yes, I’ve literally been told that). And beating yourself up when you binge or eat the wrong food and are punished by a flare up of nausea and pain.

Sometimes, I wake up in the morning and I can’t even bring myself to get out bed. I feel hopeless, that things can’t get better no matter what I do. I feel useless because sometimes I’m not able to do things to the best of my abilities or I just can’t do them at all due to my illness. I feel like my dreams are always out of my reach. It’s so incredibly easy to get into a downward spiral, slipping further from the surface and deeper into a pit of despair.

It’s OK to have bad days. It’s OK to feel hopeless sometimes and let yourself have these emotions, but you can’t stay in that pit forever. You have to dig yourself out and come back stronger. Because you are more than your illness. You are worth more than you think you are. You’re not alone in your battle. You are a powerful, resilient, badass chronic illness warrior!

Getty image by LUMEZIA

Originally published: April 27, 2021
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