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What Chronic Illness Looks Like Behind Closed Doors

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drawing of iceberg
Drawing of iceberg with the part below the water labeled “What people don’t see” and part above water labeled “What people see.”

Living with chronic illness is lonely as f*ck. I spend so much time on my own — more time than I ever expected to spend on my own, or have ever wanted to. There is so, so, much of my life that people don’t see. I share parts of it — through social media, my writing and cartoons, and in person with friends — but there is a ton of stuff I don’t share, but yearn to every day.

I don’t share all of what’s happening partly because of shame and embarrassment and a sense of deep, deep, failure and self-blame that my life looks the way it does and I feel the way I feel, and a fear of what people will think or a fear of saying things exactly as they are (it makes it more real, right?) but also because I don’t even know where to start…

When someone says, “How are you?” — like genuinely asks me, not just the polite, in-passing, “How are you?” (which is actually often easier! But also brings a whole lot less connection and care in the end) — it’s so hard to know how to respond! Even if I share part of my physical/emotional experience, I rarely feel like I’ve touched the tip of the iceberg of what’s happening inside my body.

I might say, “I’m in a lot of pain,” or “I’m feeling really rough,” but that barely touches the sides of how I’m really feeling in that moment. It doesn’t describe — or do justice to — the fireworks going off in 10 different areas of my body, the deeply painful debilitating pain in my pelvis, the stomach-buckling pain in my abdomen, the sparks shooting down my legs, the daily migraine that never fully disappears, the nausea and flu-like malaise, the swirling anxiety and deep fear that things will always be like this, the worry that I’m not going to be able to stand up straight long enough for us to finish the conversation, the painful despair I feel about my life and my chronic illness, and the guilt and sadness that despite loving seeing my friend, all I’m yearning to be doing is lying down, in a dark room, with no stimulation…

It’s heartbreaking. There’s no other word that describes it better — the grief for the loss of my health, and my adoption of all these limitations, is indescribable. I don’t let myself fully feel it, or actually feel it much at all, because it feels too big — the sadness feels too big. I find myself feeling grief in random moments, such as when my friends tell me what they were up to over the weekend (and I spent the weekend/week in bed, and haven’t done any of what they did in a weekend in the last year…). Or when I see old photos of myself at the beach, surfing. Or when I have to say no, or hit “decline” on an invite, again, to an evening or day of something fun and nourishing that’s happening. Or when I find myself telling stories of past adventures (and there have been so many!), and I remember that my “adventure” or achievement at the moment is going to the shop…

drawing of fist punch and drawing of girl on fist
Drawing of fist with girl on fingers looking sad and caption “Grief’s hit.”

It’s in these moments I feel deep despair but also a desperate frustration at the unfairness of it all — the unfairness of being chronically ill. I would give anything to do just some of what I hear or watch my friends doing. I hate how jealous and resentful I end up feeling towards my friends and what they’re doing… It saddens me so much that I end up feeling guilty!

I want to tell people how I’m not able to do hardly any of what they do every day. I want them to know what it’s really like to be chronically ill. I want to make sure they appreciate every moment of being well, because it’s such a fucking special gift – one you don’t realize the magnitude of until it gets taken away. I want to say, “Imagine you could never do [insert most of the things they love] again…?” Or, “Imagine if getting up, getting dressed, and cooking enough food for the day was all you could do every day, and even doing those things was a seriously painful and demoralizing struggle?”

I want to talk to them about it. I want to open up dialogue about this, but I feel scared. Scared of really saying how it is, of describing every little bit of my experience, and of feeling the deep grief that comes with this stating-the-truth. Scared of being heard, of being held. Scared of being “intense.” Scared of dampening the moment. Scared of reminding people that sometimes life is just unfair. Scared of losing friends if I really show them me… I get lost in these cycles of self-talk and limiting self-beliefs. I forget the brilliance of my friends and I forget the lovability of me.

I wish chronic illness was easier to explain. I wish the internal suffering and physical restrictions that me and millions of others experience were easier for people to understand and empathize with (without having to actually experience it). There are so many bits of “life with chronic illness” that nobody sees, that after a while, build up and up and up so much that I feel like I cannot breathe under the (metaphorical) suffocation this experience of illness causes me.

These are the bits I yearn for people to see — the bits that stop me being and feeling free, the bits that cause me to forget me.

stick drawing of person thinking what happened
Drawing of girl thinking “What happened?”

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Originally published: February 14, 2017
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