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What We Want You to See About Living With an 'Invisible' Illness

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When you see us, we smile, joke around; maybe we have makeup on, our hair styled and we’re dressed up. We look “normal” to other people’s standards. We probably tell you multiple times that “we’re fine,” when in reality there’s a war raging inside our bodies and we’re fighting with our all strength just to seem normal. We smile; we don’t show you our pain.

When you don’t see us, we are in our comfortable clothes. We are in too much pain to move, to do simple tasks. Cleaning is exhausting. Cutting vegetables is a horrendous task. Even getting out of bed and taking a shower and brushing your teeth is an ordeal. We battle a war that many on the outside can’t even comprehend or understand. We grab our fuzzy blankets, slippers, pillows, heating pads, and ice packs and sail. We sail down a rapid river, ready to battle pain, exhaustion, chills, stiffness and more. Netflix, a book and maybe the company of your partner or furbaby to try to help you through this. It will pass as all things do but, when?

We struggle; we struggle a lot. Many don’t see our struggles because we hide these days. You don’t see us cry, curled over in pain in our homes, or debating if we should go to the emergency room or “just wait it out.”

You don’t see what a simple trip to the grocery store does to us, or how we’re pretending to be well and work, take care of our families and responsibilities, which are exhausting. You don’t see how simple trips running errands drain us. How we get frustrated with our very selves because of the things our illness or pain has taken from us. Simple tasks for healthy people are like rock climbing to us. If we do too much… well, consider yourself falling off that mountain, slamming to the ground and dealing with the consequences of doing too much.

If we vent to about our pain, please don’t take it as complaining. We are in chronic pain, which means it’s all the time. We are flustered and just want you — someone we trust or value as a friend — to listen. We don’t need your remedies or how dancing in the harvest moon at 4:45 a.m. while covering your self with mayo helped your aunt with the same problem. We just want you to listen. We need to vent just like you.

We want to tell you not to take simple things for granted. We are almost jealous of you. We are upset about our lives before diagnosis and now. We overcome obstacles that seem impossible. We want to live our lives just like you. We do this because we have no choice. We adapt. We try so very hard. We just want you to know we’re not invisible. Please listen and give us all the chance we deserve. Our problems may be invisible, but we’re not. We’re right here.

Photo by Rikki Austin on Unsplash

Originally published: February 8, 2019
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