You know, living with a Chronic Illness is no easy.
Taking advantage of being the month for Crohn's and Ulcerative Rectocolitis Awareness, I'd like to comment my own experience on it.
I'm being diagnosed with UC, yes, the diagnosis is not yet finalized even though I'm living with the symptoms for almost 5 years now and this is something a lot of patients with it have to go through. Mostly, when the inflammation is diagnosed we already fucked our body without even knowing.
To go through life with chronic bowel symptoms, joint pain, psoriasis and obviously the infamous fatigue humbled me and pissed me off in ways no healthy person had.
Somedays it feels like your whole world is crumbling like a pie, you have no energy to run simple chores like washing your hair and having a conversation with someone. When it comes to the physical symptom, oh well, whenever I have one flare I'm always wondering "what did I eat?", "was it too much?" "am I stressed?" or if i'm discovering a new intolerance.
And when it comes the day you have to grocery shop, everything you lay eyes on it's something you might have to look twice at the ingredients. And yall may think "well, just buy it in the health food aisle", have you guys seen the price? Goddamn, why is it that greasy and bad food is so cheap?
And it's not only the food, it's the soap you have to use an unscented one with a good-to-your-skin pH level, the moisturizes for ultra-dry skin that it's really expensive, the medications for tiny little symptons. And the psychological pressure is absurd; your friends invite you to some bar or restaurant, you'll need to take a look at the menu first, before you accept the invitation. And most of the times you'll have to order a salad (and ask the waiter to take off some of the ingredients that might flare you up).
Oh, and the weight loss, I personally lost all my clothes, had low self esteem which made me a little depressed and I no longer recognized myself in the mirror. It was awful.
We need to understand our bodies, learn how to balance our energy, which foods you can eat (including the natural ones), how to have fun without a single drop of alcohol, how to manage stress... It's all too overwheming, and exhaustive and no wonder the rates of depression and anxiety in IBD patients it's significantly elevated.
The non-professional support it's hard to find beyong ourselves, we try to explain to our family and they struggle to understand how come one day you're full of energy and the other you can't get out of bed. And I'm not trying to be a victim here, we're strong and capable, we just need to figure out our pace and stop trying to compare our lives with healthy people's, they don't have to deal with this.
And we're trying as much as you are. My head doesn't stop trying to find the ways I can make more money without letting the fatigue ruin my plans. I would really like to live abroad for some time; I'd like to live in Italy or Ireland or even London, but as a immigrant, how am I supposed to make income without increase my fatigue and anxiety levels?
Yes, to grow in life is hard, but for us is way harder and there's not much we can do but try.
I just need to try.
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