How to find purpose and meaning in life with chronic illness

Even when we're sick in bed, 'small wins' are always possible

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by Marisa Zeppieri |

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Picture it: You’re deep in a lupus flare and have been in bed for weeks. In the silence, you think, “What is my purpose if I’m constantly sick?” or “How do I find meaning in my everyday life?”

I can’t count how many times the frustration of being stuck in bed, sick and dependent on others, made me feel that I had little purpose, as though my life had no meaning. At times, I felt like I was alone on an island while everyone else was back on the mainland leading incredibly meaningful lives. My world had shrunk, and it was heartbreaking.

For the most part, I was the one applying pressure on myself to have some grand purpose, but spending time on social media wasn’t helping. Everyone seemed so busy traveling, hustling, starting companies, producing, and creating. Everywhere I looked, a jampacked life seemed to be the norm. Unfortunately, that’s just not realistic for someone with a chronic illness.

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To find peace and meaning in my life, I had to do so on my own terms — or rather, my body’s terms. I came to the conclusion that being productive doesn’t always mean completing a grand task. Most days, there are small ways to find meaning and purpose. I call these “small wins,” and we can find them almost daily if we look closely enough.

Following are a few strategies that have helped me immensely on my journey and might help you:

1. Consider your creative side.

Creating something can be therapeutic and rewarding, not to mention fun. It’s the first avenue I take when I’m in a flare but still want to do something. Whether I’m painting, writing, or designing graphics, I get joy when I create something out of nothing.

If creativity isn’t your strong suit, thousands of videos online can teach you how to draw, paint, outline books, start a blog, and more. And with graphic design sites like Canva, you can create anything from a magazine to a T-shirt graphic, cookbook, or social media artwork in minutes.

2. Learn something new.

If you have the headspace for it, learning something new can open up a whole new world while allowing you to experience small wins. For me, it was French. I’d always wanted to learn a new language and was particularly drawn to French music and films.

I found a teacher who does lessons via Zoom and then subscribed to numerous YouTube channels on French dialogue. Even on the days I’m stuck in bed, I feel like I’ve made progress in my practice, and I have a new language to show for it!

If a foreign language isn’t your thing, consider learning about investing, opening an Etsy shop, writing a book, playing the guitar, or even becoming a gluten-free chef. We live in a time when the possibilities are endless.

3. Become an online advocate.

You’ve likely seen advocates posting in disease groups and forums on social media, and you may be wondering how you can share your own story. There are so many options these days, from building a website or blog to chronicling your story in videos on TikTok or Instagram. Some enjoy leading online support groups or writing short, downloadable books about a specific condition, while others prefer to stay behind the scenes and help create graphics or content for nonprofits and rare disease organizations.

Whatever your comfort level and skill, you can find a way to create meaning in your life and give back to your community, even if you’re stuck in bed.

Yes, being stuck in the hospital or at home in bed can be extremely frustrating and challenging at times, but it doesn’t mean that our lives lack purpose. My greatest piece of advice is to find the small wins; focus on the little things each day that bring you joy, make you smile, or help someone.

Finding purpose doesn’t have to involve an enormous project; you could simply share a short social media post and photo about how you take care of your mental health or practice self-care. You never know — that post might reach someone who’s hurting and needs advice.

Productivity is subjective, so it’s important to find ways of being productive and purposeful that work for you. Remember that it’s a journey of trial and error. Most important, find joy in the process. Chronic illness can take so much from us, but meaning and purpose don’t have to be part of the losses.

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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