To Anyone Else With a Chronic Illness Who Doesn't Like Asking for Help
I quit working almost two years ago. I had tried to push through the pain, nausea, fatigue and other symptoms, but I no longer had the strength to balance work with illness.
I remember what it was like to have a schedule. I remember trying to sleep through the night, but having to get out of bed every 45 minutes to pee because I was having an interstitial cystitis (IC) flare. I remember waking up in the morning with a burning sensation in my stomach and bladder from that same IC flare. I remember going into the bathroom to get dressed for work, and sobbing over the sink in exhaustion and misery while my husband slept peacefully in bed. I remember because I still have these nights. The only difference now is I no longer go to work.
Chronic illness is my full-time job. Sure, it’s not a glamorous job, but apparently it is my calling. When I first stopped working, I felt ashamed to tell anyone. My friends and family knew a little about my illnesses, but I don’t think they really knew just how sick I was until I quit working.
I don’t like asking for help. I’ve always been a fairly independent person. People won’t always understand, and they may think you’re “lazy” or asking for a handout. Don’t let them shame you. They don’t understand that when you’re up all night in pain, they’re sleeping soundly. While they’re eating breakfast, you’re trying to fight off the nausea. While they’re out dancing with friends, you’re sitting in a bathtub full of epsom salts. They can’t see how hard you’re fighting.
You’ll have people make comments like, “I wish I didn’t have to work.” As if you’re spending your days by the pool drinking mimosas.
Don’t be ashamed about having to change to part-time work, filing for disability or having only the income of a supportive spouse. Don’t feel ashamed for needing to take a nap, or for asking someone to go grocery shopping with you, or for needing someone to drive you to your doctor’s appointment.
This job of chronic illness is a tough one, and unlike most jobs, you won’t be getting vacation days.
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