Have you heard the phrase “But you look good!”?
It’s often directed towards someone with an invisible illness. And the person who says it is well-meaning. All they’re telling us is “I’m sorry you’re sick, but at least you don’t look bad!”
But it doesn’t really feel good when those words are directed at you because what we often hear is “You look healthy, so you can’t be that sick.”
But we are. That. Sick.
For many people, their chronic illness has cost them. Besides the obvious way, financially, with those giant medical bills, but some have had to give up jobs they love, an education they dreamt of, trips, goals, dreams, marriages.
When people with a chronic illness can’t work, they can’t work. Many get their identity from their jobs. I liked my job very much. I worked at home full time for 20 years and was quite skilled. I never had to seek out clients. They always sought me out. I was able to make a decent income, use my skills, and the best part: stay at home with my children. Because I have Crohn’s disease, working outside the home had become an impossibility.
That’s the same truth for many others with chronic illness. Fatigue, severe pain, weakness, chronic tests and surgeries, infusions and injections, dizziness, depression, anxiety, throwing up, a dozen or so trips to the bathroom each day…sometimes leaving the bathroom and having to turn around and go right back. All day long.
That’s the ugly truth about it and we’re often judged for it. There came a time where I couldn’t do my job full-time anymore. Or even part-time. The stress and the schedule – even though I was working at home – became too much and I physically couldn’t keep up with it. And I still can’t because I’m not any better now than I was when I was forced to quit.
I’ve heard different judgements like “I wish I could stay home all day and do nothing.” Ouch. Well, we don’t do nothing. We wake up in pain – if we slept much at all. If you have IBD, you take a risk every time you take a bite of food. How will it affect me today? Will it digest okay? Or will I be bent over in pain within the hour?
Every morning when we wake up, how we feel will dictate what we’re able to accomplish that day. Sometimes it’s nothing. Sometimes folks with chronic illnesses get up in the morning, only to have to go right back to bed. Is that the kind of thing you wish you could stay home all day and do?
Don’t think this “lifestyle” comes without guilt. Every time I’m in too much pain to do dishes or put away laundry, I feel like a failure. They’re such simple things. They don’t take tons of energy. But sometimes I physically can’t even do those simple things.
We feel like we’re letting down our friends or family if we’re in too much pain to show up at an event. Or sometimes you’ll actually get to the event, only to have spontaneous horrible pain that you can barely stand, and you’re deciding whether you should head home or to the ER.
We’re seen as lazy sometimes, dramatic. It can’t be that bad, they say. But it can. And it is. And those days that you might see us looking pretty good, even acting like we’re not sick, celebrate that fact with us because there isn’t a plethora of those days. And when those rare days come, we want to squeeze the very most out of them, so please let us.
I think I can understand that many people don’t know what it feels like to be in the shoes of someone with a chronic illness. If you haven’t “been there” you don’t know what it’s like to “be there.” So trust the person when they tell you they “just can’t today” or they’d love to go but they’ll have to “wait and see how I feel.” It’s hard to plan when you have an illness that’s so unpredictable.
If you have a friend or family member with a chronic illness, ask them what it’s like to live in their shoes. What are they feeling and what do they wish you’d understand? Try to see behind their eyes and get a glimpse. Then you’ll have not only a better understanding, but a richer relationship and be able to have their back. Educate yourself and you’ll be able to educate others.
Be kind to each other,
Melanie Pickett is a writer and speaker. Her blog was born out of her desire to reach and encourage women who’ve experienced struggle and hurts, particularly domestic abuse, as she has. Melanie speaks and writes about her own experiences as well as different aspects of relationships, healthy and otherwise, to inform, inspire, and make others feel encouraged and supported. She is an entertainment editor for a Christian women’s magazine and co-founder of the women’s ministry Yours Girls for women all-in for Jesus. Melanie is married and has two amazing teenage children who are her heart and soul. When she’s not writing, she’s reading, spending time with her family, cuddling her pug Gracie, or enjoying the beauty near her home in West Michigan. You can keep up with Melanie at her blog, on Facebook, Twitter and Instagram.