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5 Things the Healthy World Should Know About the Chronically Ill World

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Sometimes, the gap between us can feel insurmountable. Maybe we’ve become so immersed in our world of sickness and symptoms we can’t remember what it’s like to be healthy. We stare at you with curiosity and wonder like you’re an unknown species. Maybe you feel the same. You want to understand the chronically ill in your world, but they feel so far away. I’d like to help with that today by sharing five things the chronically ill want “healthy people” to know.

1. We need your help. Despite our desperate desire not to burden you and to maintain our previous level of independence, the truth is we need your help. We can’t do the things we could before our illness took over and sometimes we’re afraid to ask for help because we’ve been hurt or disappointed in the past. It can be isolating and scary to need help and yet, not know where to find it. If you’re willing to help, speak up. Let us be honest about what we need. Don’t assume you automatically know what help we need. And if you can find a way to lend a hand without making it feel like a big deal? Well then, extra brownie points for you.

2. We feel like we have to pretend. We know hearing about our illness gets old fast. Heck, it’s our illness and we’re tired of hearing about it. But sometimes it’s overtaking us and we may feel like it’s crowding out our relationship. So we might pretend. We pretend to feel better than we do. We pretend to feel more optimistic, less afraid than we do. All this pretending is done for your benefit, but can leave us feeling more alone in the long run. So when we do break down and tell you how afraid we are? When we’re honest about just how bad this flare has been? Your response tells us how honest we can be in the future. The weight of our illness(es) can be a lot for one person to carry. We’d love for you to be a safe place where pretending isn’t required.

3. We didn’t do this. We didn’t choose to be sick and we’d undo it in a heartbeat if we could. Many of us had a genetic predisposition to our illness, which was entirely outside of our control. While we may not be managing our illness in the ways you would, chances are we’re doing our best. Fighting for health is demanding, exhausting, hard and worthwhile work and what your mom taught you about saying something nice or nothing at all applies here. If you can’t cheer us on, please don’t kick us while we’re down.

4. We want to thrive. We don’t enjoy lying in our beds all day or being unable to work. It may look somewhat appealing from the outside, but it’s not. Resting is fantastic when it’s an option, not when it’s a necessity. We hate missing out on significant events in your lives. We want to be productive members of society. We’re doing everything in our power to set up a profitable lemonade stand in our front yard with this pile we’ve been given.

5. We envy and appreciate you. Yes, it sometimes stings to see you out living a life I can’t. This doesn’t mean I’m not happy for you. In fact, it means I want this fulfillment for you all the more. I love to see people enjoying life to the fullest. But just like the woman who struggles with infertility may ache upon hearing her best friend’s pregnancy announcement and still be thrilled, we may feel joy and sorrow as we watch others living out our dreams. Mostly, we’re really glad we get to do life alongside you.

A version of this post first appeared at Chronically Whole.

Originally published: September 14, 2016
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