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How I Answer the Question, 'What Does Lupus Feel Like?'

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I’d like to say I woke up feeling so-and-so, but the reality with lupus is that I have already awoken quite a few times throughout the night; that is if I went to sleep at all. Many people have asked the question, “What does lupus feel like?” Honestly, this can be a tough one to answer, first because every lupus patient’s symptoms can be different and vary in severity. Second, the pain at times can just be indescribable. I am going to do my best to try to put this answer so many ask into words.

If you’ve ever had pneumonia or the flu, you know the kind of sickness that takes your breath away after you walked just a few steps? This is what I feel when I am experiencing on any given day at any chosen time that a lupus flare decides to show up. (Unfortunately for me, I’ve never had the pleasure of seeing a day without a lupus flare since being diagnosed). There are times I have to sit after walking to the bathroom just to catch your breath to be able to walk back.

Take a deep breath. Refreshing, isn’t it? Now imagine with every deep breath your chest has a sharp agonizing pain in it with each deep breath you took, this is what it feels on days when pleurisy (pleurisy is when the pleura, a membrane consisting of a layer of tissue that lines the inner side of the chest cavity and a layer of tissue that surrounds the lungs, becomes inflamed) hits. This can happen to me as often as seven to 10 days out of the month. It’s terrifying and makes you feel as though you’re having a heart attack, which then brings on the ever-so-horrifying panic attack.

It can be quite relaxing to sit and look out the window at the scenery surrounding me — then I start to feel a burn so badly my skin feels like it’s beginning to peel off, only to realize while momentarily enjoying the beauty outside that my skin has came in contact with the sun through the window. This is what lupus and sun exposure is for me.

A refreshing shower after a long day, washing my hair only to end up with a handful of it in my hands — this is lupus.

Have you ever experienced a cold sore, or a blister on your fingers? Now imagine those surrounding your inner mouth and nose. This happens several times a month and is very painful.

We all love to relax and watch a movie with our loved one cozied up; who wouldn’t? Except if your loved one holding your hand made you feel as though every bone in your hand was breaking into a million pieces, while each joint in your body was burning in pain from sitting still for all of an hour and a half from watching a movie curled up with your loved one.

This is just part of what my lupus feels like. I didn’t even touch on the walking up and down stairs, riding in cars, etc. Maybe this can help you understand a little and empathize with a friend or loved one who may be living with lupus.

Originally published: September 2, 2016
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