Patient Perspectives | #LupusFeelsLike
Patient Perspectives
#LupusFeelsLike
May 16th - 3 PM EST
The #LupusChat Influencers
Welcome to the #LupusChat recap! 37 participants joined us on May 16th 2021 and made their voices heard, generating 938 tweets and 5.413 million impressions.
Lupus Awareness Month continued and in this discussion we shared our collective experiences and shined a light on what #LupusFeelsLike to help amplify and uplift the voices of our lupus community.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and if we could speak another language, what it would be. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Ivey Janette,Albuquerque. Somehow surviving SLE and lupus nephritis since 1995. My Spanish isn't as good as it should be. I'd like to learn Italian,Portuguese and Japanese. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 16, 2021
I’m so late to this but I’m going to join regardless.😅 I’m thina, from Houston TX, a “Kpop YouTuber”, and I would love to know much more Khmer so I can speak to my family in Cambodia.👍🏼 #LupusChat https://t.co/rycWIGyfYB
— THEE-NUH💭 (@thina_savvy) May 16, 2021
Hi Raquel from TX. I love researching and exploring. I would love to learn to speak some West African languages...also French and Italian. #LupusChat https://t.co/c84ntoq1GF
— RaquelRoschell (@raquelonpurpose) May 16, 2021
Bon jour, Loopmmunity! Je m'appelle BBG. Dx'd '15 et a Lupus Legacy™️. I'd like to learn to speak Gaelic but I'd like to learn to sing in Italian. #LupusChat
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 16, 2021
Hi... I'm Elizabeth from NJ and a #LupusChat co-host
— Caring For Lupus (@CaringForLupus) May 16, 2021
My connection to lupus is through my daughter Miah, she is fourteen year old.
Another language that I would like to learn is Korean.. And it is because of the K-dramas 😉 pic.twitter.com/0h2mnAPpod
Hey #LupusChat, I'm late but I'm here 😂😂 I'm Sofia from Portugal and I would love to speak Italian!!! https://t.co/SpXkRyZm5J
— Sofia (@abssofia) May 16, 2021
Then we began with question 1.
Q1. How do you feel about #LupusAwarenessMonth? Is it something you look forward to? Do you celebrate it? Hate it? Explain.
A1 I feel oddly neutral about it because of the fact that there’s always new positives and new negatives, so it’s like... a constant act of balance so yeah, neutral👍🏼 #LupusChat https://t.co/dG1YaouI19
— THEE-NUH💭 (@thina_savvy) May 16, 2021
A1: I have a love/hate relationship with #LupusAwarenessMonth because I get excited to learn new things and connect with my fellow lupies but when I mention it offline with fam/friends the response is always a silent “so what?” And it makes me feel silly. #LupusChat
— Bella Reeves (@bellaproduces) May 16, 2021
A1) I appreciate the efforts of #LupusAwarenessMonth. It's the one time of year I believe my loved ones actually consider that I may be sick because I never look like it. I do ask them to participate in Wear Purple Day. #LupusChat
— itsmorenamorena (@itsmorenamorena) May 16, 2021
A1: In my early diagnosis years I felt so excited to celebrate #LupusAwarenessMonth. It would be a huge affair. My mother would decorate the house with purple butterflies & everything. I’d even wear a purple wig or headband w/ butterfly wings at the annual lupus walks. #LupusChat
— Tiffany (@TiffanyAndLupus) May 16, 2021
A1 For my family....#LupusAwarenessMonth is something that we look forward every year.
— Caring For Lupus (@CaringForLupus) May 16, 2021
Our town hall is illuminated in purple 💜🦋😍.
Our community comes together to support all #LupusWarrior against Lupus#LupusChat pic.twitter.com/YRzB2AZfCX
A1. I love #LupusAwarenessMonth even though I lived with it everyday for the past 4 years I'm still learning things about the disease #lupuschat
— MarDontKnow (@MarTG993) May 16, 2021
After sharing our honest feelings. about Lupus Awareness Month, we moved on to what #LupusFeelsLike.
Q2. Can you explain what a good day with Lupus feels like to you? What does a bad day feel like?
A2. A good day for me would be waking up and just wanting to be active!! I take advantage of those days because a bad day means a date with my bed and a heating pad #lupuschat
— MarDontKnow (@MarTG993) May 16, 2021
A2: A good day feels both like freedom annnd like waiting for the other shoe to drop. Will the activity of feeling decent lead to some physical retribution on some other upcoming day? Bad day? Like what I imagine folks near enough to live briefly at Chernobyl felt like #LupusChat pic.twitter.com/Bj7vUuHYEY
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 16, 2021
#LupusChat
— The Lupus Rainbow (@thelupusrainbow) May 16, 2021
A2: Every day is a blessing 😇 Best days 💫 pain manageable, laughter, doing something creative and loving/receiving it ❣ Bad days 🌧 it's raining in my life...nothing works; body, mind and spirit. I always know that after 🌧 a rainbow 🌈 will appear 💜💜💜
A2. A good day means that I can move about the world with little pain, and I am confident about myself and who I am in the world. A bad day is today, days where I don’t feel like myself, where I feel weak and depleted of energy. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 16, 2021
A2 cont: on a bad day I feel super fatigued. I may take two naps instead of one. If I get out of bed, I probably won't make it much further than the bathroom or the couch. I probably won't be up to showering, or much other self-care. If I leave, my wheel chair is req. #LupusChat
— Broken Immune System (@mxdragoncakes) May 16, 2021
Lupus is often referred to as a mystery. This can lead to misinformation. For Question 3, we worked to share the truth about our Lupus experience.
Q3. Share and debunk a myth that people have about what it's like to live with lupus, chronic illness, and/or a disability.
Yes!!! That saying “no pain, no gain” doesn’t work for those of us with lupus. Trying to push through things when we’re in pain instead of resting has horrible consequences for us. #LupusChat A3
— Tiffany (@TiffanyAndLupus) May 16, 2021
A3 Even though you might seem good in the outside.. It doesn't mean that your body is feeling well.
— Caring For Lupus (@CaringForLupus) May 16, 2021
Just because you are a child and you are supposed to be full of energy... That is not the case when it comes to Lupus#LupusChat
A3: I hate it when people watch you do your daily activities and then question my pain 😔#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 16, 2021
A3. 🗣🗣 MEN GET LUPUS TOO. (its unbelievable how many times I've defended this) #lupuschat https://t.co/VcUb1vOFli
— MarDontKnow (@MarTG993) May 16, 2021
Much of the information we see about Lupus has been from targeted campaigns through the years. We discussed how those depictions have shaped our experience with Lupus over time.
Q4: Do you feel that past and current awareness campaigns adequately represent your experience with lupus? What would make them resonate more with you?
A4:🤣No.
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 16, 2021
Idk. For instance, and I don't wanna be struck by a lightning bolt, but a Lupus *Walk*? A physical impossibility to large swaths of the Loopmmunity? ...In the sun?... has never quite sat right w/ me. Tbh, it's something I'd wanna give thought to
> realness #LupusChat
A4: I honestly haven't seen too many awareness campaigns. I think things I have seen have painted Lupus as like "you can live a totally normal life with Lupus" and uh. honestly that makes me feel like shit. #LupusChat https://t.co/YKOdGv7oDd
— Broken Immune System (@mxdragoncakes) May 16, 2021
A4. I don’t if I can say that campaigns represent my experience, but through them I’ve connected with people who share my experience. I’m very glad that I can be so vocal about my and other people’s experiences. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 16, 2021
A4: I appreciate campaigns because increased awareness leads to more research. It would be cool if they had specific campaigns targeting docs/researchers, patients and the general public. Each group has a different agenda. #LupusChat
— Bella Reeves (@bellaproduces) May 16, 2021
A4 : I agree about feeling underrepresented. Again. It would be nice to photos of symptoms and them be examples of African-Americans and more. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 16, 2021
A4. None of the current awareness campaigns represent my 25+ year struggles and experiences with lupus. You barely hear about lupus even now,compared to heart disease or the pandemic. I'd like to hear success stories about those of us who are thriving with lupus. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 16, 2021
A large part of surviving Lupus is taking care of ourselves and others. For Question 5, we examined ways to respectfully show each other care.
Q5. As we talk about our own life with lupus, how can we be mindful to not compare or dismiss the experiences of both ourselves and others living with chronic illness?
A5: I think this is something that everyone should learn, like we say in Portugal "cada caso é um caso", is unique. All pains are different, all struggles are different and that also because WE, as persons, are different. So we don't have to compare but just respect #LupusChat https://t.co/sLFiYufQFy
— Sofia (@abssofia) May 16, 2021
A5 I think being mindful that every person isn't the same. Be compassionate & understand what works for me may not work for the next person. You can share your experiences and give insight but don't judge someone for not taking the same steps as you. #LupusChat
— Nae (@heynaehey1922) May 17, 2021
A5. I try to do a lot of listening. I know A LOT about my experience, but nothing about how other people experience living with Lupus. So I can't know if I don't listen. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 16, 2021
A5. We have to realize that not everyone with chronic illness has the same experiences nor symptoms. Everyone is different. I've learned that the hard way since 1995. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 16, 2021
A5: It’s important to remember that everyone’s experience w/ chronic illness/disability is valid. No two lives are the same and that’s ok. No one is doing better, worse off, or more deserving of care than you. We all deserve compassion, to be heard & share our stories. #LupusChat
— Tiffany (@TiffanyAndLupus) May 16, 2021
A5: For starters each week as we can we show up for each other. That's an investment in time AND energy that we all know isn't exactly always easy to come by. BUT HERE WE ARE. I see us supporting us all over the place on this dot com 💜💪🏽 #LupusChat pic.twitter.com/hn5DFPD4y5
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 16, 2021
Finally came our last question of the day!
Q6. If you're comfortable, using the hashtag #LupusFeelsLike please share in your own words what it's like to live with Lupus.
#LupusFeelsLike loneliness. This disease can be so debilitating. After you lose body function due to fatigue, brain fog, joint pain, & organ failure it’s hard to be physically mobile. So many days are spent in my bed versus where I want to be. #LupusChat pic.twitter.com/d0lAwKzsoI
— Tiffany (@TiffanyAndLupus) May 16, 2021
A6. #LupusFeelsLike Fatigue. Pain. At times,desperation. Not wanting to get out of bed. But then,there's HOPE. Encouragement. Survival. Being thankful. And believing in yourself. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 16, 2021
A6. #LupusFeelsLike being a prisoner inside of your own body, but every once in awhile the jailer let's you into the yard for rec time. #lupuschat
— MarDontKnow (@MarTG993) May 16, 2021
A6: #LupusFeelsLike never getting enough sleep, always being ready for a nap (until bedtime ofc), dealing with a lot of pain, annoying doctors, and needing to hide from the sun. Struggling to do ADLs and existing. #LupusChat https://t.co/eU1RV2bGTb
— Broken Immune System (@mxdragoncakes) May 16, 2021
A6: #LupusFeelsLike an uphill battle at best and at worst it feels like someone with a voice made of knives screaming in your ear until your sanity bleeds to death. #LupusChat
— Bella Reeves (@bellaproduces) May 16, 2021
A6 #LupusFeelsLike an emotional rollercoaster that you just can't seem to get off of. And some days it also feels like you've been tumbling down a steep cliff with no intention of stopping anytime soon.😬 #LupusChat
— Nae (@heynaehey1922) May 17, 2021
Thank you for reviewing our recap. You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.