Pain and Paranoia Are Part of the Lupus Life

Pain and Paranoia Are Part of the Lupus Life
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Picture it: It’s 2016, and life was good. I had hair. And then all of this unexplained pain ascended onto my body. I remember it like it was yesterday.

Once doctors declared what tortured me, I signed up for pretty much every Facebook group with the word lupus in it. Almost immediately, I realized that was a mistake.

What I found in those groups were people who felt hopeless and didn’t have much of anything positive to say. There were posts that listed illnesses as if competing in a competition of who suffers the most.

I didn’t understand it. I didn’t know what was happening with me, and I certainly did not understand what was happening with them. Just as quickly as I joined the groups, I left. But after battling lupus for four years, I now see some of what those people were expressing.

Lupus is sinister. It attacks when I least expect it, and what may seem small sometimes is not. I remember someone asking how a headache I had related to lupus. I thought, “Didn’t you get headaches before you had lupus? Everything is not about lupus.”

But time has shown me that any pain can leave me paranoid. Sometimes not only is it because of lupus, but it turns out to be a big deal.

When I am standing, I cannot for the life of me put my hands on my hips. I can push with all of my strength, but those hands will not touch my body. I can touch my lower body and walk them up, but they will not land directly on my hips. When this started, I thought there was a simple explanation for why I needed both hands to help each other when I showered. My doctor was concerned. A neurologist also was concerned. They thought that another ailment was causing my brain to rebel and shut down my body, keeping it from doing what it deemed nonessential. As the possibilities were discussed, I was freaking out.

We never figured out why I can’t put my hands on my hips, or shower my midsection without one hand holding down the other. But lupus decided it needed to be an issue. And that ordeal led to the sleek, bald hairdo people know me for today.

When I have a new ache or pain, it’s stressful. The idea that a regular headache could be lupus attacking my brain, nerves, or who knows what else is cause for anxiety.

It’s easy to judge people. I still don’t want to be in a space where there is more negative than positive, but I feel differently about some of the things that cause concern. I have more compassion for me and for others when questions arise that seem easy.

I have learned that with lupus not much is easy, and there is often cause for concern. It’s better to have it addressed than to think it will go away.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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2 comments

  1. Brenda Donofrio says:

    I hear ya, I have trouble with that too. But my issues are mainly trying to get my family or co workers to understand that I can’t always be able to do the things they expect me to. Like my step sister couldn’t understand why I could only do light work when helping my mom move back in April. It took me 2 weeks to recover. To keep my stress levels in control, I find it best to keep it to myself, unless it’s someone who understands me better. I also try to find the humor in it. Like tonight I showed my daughter how hard it was for me to walk foot over foot in a straight line. She jokingly said that I would fail the sobriety test if I was pulled over. So I said to her that at least I would pass the breathalyzer test. I don’t drink.

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