A Day in the Life With Lupus

By Lupus.net Team

1 min read

Lupus can leave you feeling drained, physically and emotionally. People who do not live with lupus do not always see the complications and struggles those who have lupus face each day – or their incredible resilience! During Lupus Awareness Month, we want to shed light on the daily uphill battle and the downward spiral of chronic illness.

We asked our team of lupus patient leaders who contribute and moderate within our supportive community to share with us:

Something they wish other people knew about lupus
Something they have learned on their lupus journey
Something that helps them cope on the hardest days

What I wish others knew about lupus

There are so many little-known facts and deeply personal ways lupus touches someone's life. It might get in the way of attending special events or finding the energy to shower. Our Health Leaders offer valuable insight into what they go through daily with lupus.

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What I have learned on my lupus journey

Lupus is full of life lessons. Anyone who lives with the condition knows that there are some lessons they did not ask for. Here are some ways our Health Leaders have learned about expectations, self-care, wins, and non-wins along their lupus journey.

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What helps me cope on the hardest days

It can be challenging to find hope in the darkest moments. Developing healthy coping skills might look like taking a break from demands, spending time with children or pets, or creating a poem or piece of art. Here are some ideas from our contributors:

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A day in the life with lupus

We hope you enjoyed following along with what a day in the life with lupus is really like. Spreading lupus awareness and advocacy can only help raise the voices of those who can and should be heard. Let us know what your day in life is like in the comments below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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BrandiD49 Member
Wondering about how to get involved in a blog or forum something to channel my thoughts 
1. GabbyFormica Community Admin
 <inline-mention username="BrandiD46" user-id="2038318"/>, You are always welcome to share your thoughts and experiences through our stories: <a href='https://lupus.net/stories!' target='_blank'>https://lupus.net/stories!</a> or if you have a question that you want to discuss with other community members start a forum: <a href='https://lupus.net/forums' target='_blank'>https://lupus.net/forums</a>. I even find journaling at home on my own helps me organize the mess of thoughts circling around in my mind! Gabby (team member) 
2. Ava Meena Moderator & Contributor
 <inline-mention username="BrandiD46" user-id="2038318"/> like Gabby said, we always welcome you here! But you can also create a free blog through a platform like <a href='http://wordpress.com' target='_blank' rel='noopener noreferrer ugc'>wordpress.com</a> or, something that is easier to do for many people is to blog on an already setup space such as <a href='http://medium.com' target='_blank' rel='noopener noreferrer ugc'>medium.com</a>. There's also a chronic illness website called The Mighty where some people love to submit stories, some people love that platform and others don't. Just wanted to give you a few more ideas! Getting your thoughts out there could help you and others. -Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team
Ava Meena Moderator & Contributor
I LOVE how y'all put this together and what everyone had to say! This is chock full of valuable advice and so great for people to see! I especially love <inline-mention username="Gabrielle Davis" user-id="2038729"/> - how intentional you were in these videos, I could feel your sincerity through the camera and loved the advice you gave. 😀 -Ava, <a href='http://lupus.net' target='_blank'>lupus.net</a> team
Gabrielle Davis Moderator & Contributor
Thanks so much <inline-mention username="Ava Meena" user-id="2042408"/>! It was great seeing everyone's take. I love how we all gave different answers, but there was a common thread of how real lupus is.
CMG23 Member
Thank you for sharing this article with videos of real people talking about it. Reading an article is great but to see and hear faces, voices makes you really feel connected in some way that reading an article can't do. Thank you so much.
1. GabbyFormica Community Admin
 <inline-mention username="CMG23" user-id="6701286"/>, Thank you for watching! I'm so glad it resonated with you and that you were able to feel even more connected with our amazing team of advocates. Wishing you a flare free weekend! Gabby (team member)
CommunityMember6ce026 Member
I am struggling with a coworker. I am so tired some days and she constantly ridicules me. How can I make things better?
1. Erin Rush Community Admin
 <inline-mention username="CommunityMember6ce026" user-id="8450955"/>, oh, man. I am sorry you are in this situation. I don't know how close you are to this coworker, so finding a workable solution may be tricky. Is this coworker open to a direct comment like, "I sense you are frustrated with me. I'm frustrated, too. But, I have Lupus and I promise you that I am not exaggerating or faking any symptoms. Lupus is an autoimmune disease and they can be very unpredictable. Some days, I may appear fine, but I feel terrible. Some days start out great, but I get tired before lunch. And some days are just ROUGH from start to finish. Can you and I come up with some workable solutions or communication to ease any frustration going on here?" You can also try sharing information about Lupus with her. But again, I know workplace relationships can be tricky and that it may not be feasible to share information about Lupus with her in a way that won't make the situation worse. And, going to H.R. is always an option, but I tend to save that for last. But, please; if her comments are preventing you from getting your work done or seriously affecting your morale, please speak up to your supervisor or H.R. Best, Erin, <a href='http://Lupus.net' target='_blank'>Lupus.net</a> Team Member.

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