How Lupus Awareness Month motivates me to help others

A columnist shares tips and activities for this annual observance

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by Marisa Zeppieri |

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It’s that time of the year again, when we “lupies,” “spoonies,” or whatever you want to call us come out waving our purple banners. May is a special month for raising awareness about the life-changing illness that is lupus.

For me, it’s a time to go big, as Lupus Awareness Month always lights a fire under me. The excitement keeps me going for the rest of the year, because unfortunately, lupus doesn’t take a day off. So why should we?

The funny thing is, I used to be the opposite of outspoken regarding this illness. Picture this: Two decades ago I’d been recently diagnosed, and I felt as if I’d been handed a one-way ticket to some far-off universe. I’d never heard of lupus and didn’t understand what was happening to my body. So I kept quiet, as if it were a secret.

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Shared stories and outreach to mark May, Lupus Awareness Month

Why did I do this? Shame and embarrassment, I suppose. Back then, lupus felt like a shadowy figure lurking in the corners of my life, and I didn’t want anyone else to see it. Plus, it seemed like no one believed me when I told them I was battling an invisible illness. So why bother?

I felt trapped in a whirlpool of misconceptions and lost connections. People ran for the hills at the mere mention of lupus, either because they thought it was contagious or it was just too much to process. News flash: We’re not fragile porcelain dolls, folks! We’re warriors with battle scars to prove it!

Yet amid the lost friendships and missed opportunities, something began to shift inside me. I realized that I couldn’t keep it secret forever, so I flipped the script and decided to embrace it.

Emerging from the shadows

This transition didn’t happen overnight. The more I learned how lupus affected me personally, and the more insight and helpful tips I accumulated, the more comfortable I felt talking about it with others. Eventually, I was able to completely emerge from the shadows and start advocating for myself and others.

An enlightening thing happened when I started to see results from talking about my symptoms and various tests. When people who were ill and having trouble getting a diagnosis told me that my story prompted them to get tested for lupus, resulting in answers, it was rewarding. I felt like all of my suffering had a bigger purpose.

So if you’re looking for ways to get involved this Lupus Awareness Month — and for the rest of the year — I have a few suggestions I hope you’ll find helpful:

Social media shenanigans: Ah, the land of likes, shares, and hashtags. Use your social media platforms to educate, inspire, and uplift your fellow lupus warriors. Share your story, debunk myths, highlight statistics or common symptoms, and sprinkle in some purple flair for good measure. Trust me, a well-timed meme can work wonders.

Community crusading: Gather your besties and hit the streets (or virtually, via Zoom) for some good old-fashioned community outreach. You can host awareness events, panel discussions, or even a lupus trivia night.

Educational endeavors: Knowledge is power, and spreading awareness starts with being informed. Educate yourself about lupus and then pass on that knowledge to others. You can share information on blog posts, in podcasts, or through old-school pamphlets that you distribute at your doctor’s office or local library.

Lend an ear, share a tear: Sometimes the best form of advocacy is just being there for someone who’s struggling. Reach out to fellow lupus warriors, lend a sympathetic ear, and let them know that they’re not alone in the fight. A little empathy goes a long way.

My last piece of advice is this: Don’t try to do all of the activities I mentioned above. It’s important that we conserve our energy. Find opportunities to spread awareness that align with your personality and gifts, and focus solely on those. When our advocacy efforts align with our passions, we’ll typically communicate our message more authentically and reach more people.

However you choose to celebrate and educate others this month, I wish you the best and can’t wait to see what you come up with.

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, and are intended to spark discussion about issues pertaining to lupus.


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