Honoring the People Who Support Us | #OurLupusCommunity
Honoring the People Who Support Us
#OurLupusCommunity
May 9th - 3PM EST
The #LupusChat influencers
Welcome to the #LupusChat recap! 44 participants joined us on May 9th 2021 and made their voices heard, generating 779 tweets and 6.246 million impressions.
In this #LupusAwarenessMonth talk we shared appreciation for those who assist us along our chronic illness journey and reflected on the impact they have on our life. Together, we honored the people who shower us with support.
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 the strangest gift we have ever received. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Hey everyone! I’m Carly, Patient advocate and a Co-host of #LupusChat. I’d say one of the “strangest” gifts I’ve gotten was a pony for my 32nd birthday. pic.twitter.com/tkZeWghWTB
— Carly by Nature (@SynceNerd_Carli) May 9, 2021
Hi... Im Elizabeth from NJ and a #LupusChat co-host
— Caring For Lupus (@CaringForLupus) May 9, 2021
My connection to lupus is through my daughter Miah.
Miah...says the strangest gift is probably ...slime#100lupus #LupusAwarenessMonth https://t.co/kEttR07Pg7 pic.twitter.com/CO4Q9PmHXN
Hi everybody! I am Raquel from Texas🏳️🌈. I am a mom. Strangest gift was a necklace from someone I hadn't seen, talked to or even thought about in 30 yrs. #LupusChat https://t.co/r3Eh094t7z
— RaquelRoschell (@raquelonpurpose) May 9, 2021
I’m Tinu. (TEA-new)
— Tinu, Empress of Twerk, Thirst of My Line. (@Tinu) May 9, 2021
In Arlington but from the DMV. I’m having a hard time making my body & mind work.
The strangest gift I’ve ever gotten is a portable TENS unit & it helped me so much.#LupusChat
Hi #LupusChat 💜
— Sofia (@abssofia) May 9, 2021
Here Sofia from Portugal and I'm a shy but little goofy girl fighting Lupus. Well, I don't remember a weird gift but I have this weird habit to guess all the gifts and tell it to people before they give it to me, like it is an amazing thing... but... no 😂 https://t.co/fZEGclKgz4
I’m Kate from Portland w/ SLE & Discoid. Not a strange gift but a favorite is a baseball mitt my son gave me many years ago. #LupusChat
— Kate Sattler | Sweet Freeze (@katesattler) May 9, 2021
Then we began with question 1.
Q1. Where do you get support from and how have those people, groups, and/or communities affected your life?
A1 I get support from someone many amazing people, my wonderful #LupusChat team, @KellyFund4Lupus @brendablackmon my wonderful husband and great family members... You guys Rock https://t.co/oa88Pd0PFu pic.twitter.com/t3JXVplA7n
— Caring For Lupus (@CaringForLupus) May 9, 2021
A1: I’m so appreciative of the tribe I’ve formed. Each person plays a very specific role in helping me manage my care. Most important of all, they each hold me accountable and help keep me on track. #LupusChat
— Carly by Nature (@SynceNerd_Carli) May 9, 2021
A1: I get my support mainly from friends and fam. They were of great emotional support when I was going through some terrible flares and upon diagnosis of CKD. They helped me when I had moments of doubt. It was my friends who encouraged me to share my story.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 9, 2021
A1 my support has been almost exclusively online. IRL I was always the caretaker so the transition to me needing the care hasn't gone as well as I would have hoped. #LupusChat
— staff of one (@hand_to_eye) May 9, 2021
A1. Some of my community was already here in #LupusChat, #SpoonieChat, #CreakyChats
— Tinu, Empress of Twerk, Thirst of My Line. (@Tinu) May 9, 2021
But I am greedy so I created more community. Whenever I can’t help myself it lifts my spirit to uplift others.
So I try to form groups around helping one another & organizing.
A1 Kearny is very supportive of Lupus Awareness.
— Caring For Lupus (@CaringForLupus) May 9, 2021
I'm very blessed to be part of such caring community.
This is Mayor Alberto Santos explaining how Lupus Awareness started in Kearny #Lupuschat#100Lupus #LupusAwarenessMonth https://t.co/oa88Pd0PFu pic.twitter.com/KBgTXWAGRs
It seems many of us have found support both inside and outside of the Lupus space. Then we examined how to strengthen support for each other within the community.
Q2. What do you think could be improved when it comes to support within the Lupus and chronic illness community? What currently works for you?
A2. More patient advocates. Especially in cities and communities of color where Lupus and other chronic illnesses are ignored. More support groups. Especially online. Thankfully I found #LupusChat on Twitter. A blessing!
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 9, 2021
A2: I would have loved for my doctor to tell me, "You're not alone," and encourage me to find support groups. I felt so alone before #LupusChat. I love my family but no one understood. Lupus Chat gave me tools to talk to them and now I have support at home and here. https://t.co/hsU4juT04h
— Bella Reeves (@bellaproduces) May 9, 2021
A2. More patient-centered focus in research, policy, and discussions could improve support within the lupus and #chronicillness space. #LupusChat
— Patient Worthy (@PatientWorthy) May 9, 2021
A2. Having a solid support network can help patients learn about new resources or research; have a community that understands what they are going through; and find an avenue to amplify their voices.
— Patient Worthy (@PatientWorthy) May 9, 2021
Additionally, Twitter chats like #LupusChat also offer a supportive community!
To best care for our patients, we must also support our care partners. In Question 3 we explored different ways we can effectively care for those who help us manage our own care.
Q3. How can we take care of and extend our support to our care partners and those who support us?
A3. Tell our partners and supporters what we need. Be vocal. Ask for help. But also be respectful of their needs and time as well. Let them take breaks if they're burned out. Or when WE'RE burned out. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 9, 2021
A3. For caretakers, check in! Ask how they are doing. Offer support and comfort when possible. Encourage self-care. #LupusChat
— Patient Worthy (@PatientWorthy) May 9, 2021
A3. I do my best to extend the same grace to caretakers as I would want for myself. Including checking in, offering my help when I can, showing understanding if they’re unable to follow through on something. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 9, 2021
A3 : Make sure our care partners practice self-care. Without question. Do random nice things for them. Stay on our healthcare treatment. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 9, 2021
A3: Learning to communicate/live without shame was important bc before that everything came out so sideways. I isolated myself which hurt them. The more confident I became, the better my fam was able to to support me. They hurt when I hurt. #LupusChat https://t.co/TKYoNT3OUj
— Bella Reeves (@bellaproduces) May 9, 2021
A3: I try to actually not bother them for anything if I can help it. But also I try to be mindful of their needs and check in with them often. #LupusChat
— Carly by Nature (@SynceNerd_Carli) May 9, 2021
As you know, everyone in your support system plays an important role, including our care team. For Question 4, we discussed the role our care team plays in our overall well-being.
Q4. Do you feel you're getting enough support from your healthcare team about managing your health outside of the doctor's office? Why or why not?
A4 the attending is incredibly knowledgeable but I see fellows and they change every yr or 2, tops. I have little continuity and they are rushed. If things were in a good place it wouldn't matter,but at the moment they aren't. #LupusChat
— staff of one (@hand_to_eye) May 9, 2021
Also I don’t know if it’s bc I live Portland or not but they recommend alternative treatments, too. #LupusChat
— Kate Sattler | Sweet Freeze (@katesattler) May 9, 2021
I want everyone to have this! 💜
No. We talk about meds and how I'm feeing and how blood work looks but that is it. I wisb we occassionally discussed the mental and emtional aspects or resources. #LupusChat
— Cotton Starr (@angvadel) May 9, 2021
A4. Sometimes I feel like some don't believe or don't understand all I'm feeling, so it's hard for me to tell them ALL. I find myself saying it's everything okay when it's not #LupusChat https://t.co/irnJplzoU0
— Sofia (@abssofia) May 9, 2021
A4: I don't think so. It's not much of a convo in general. Out of all the people I had taking care of me only one mentioned something outside of the medical network. That's it. Lol I think this is so bc they want to keep the $$$ & monitor us based on what they know.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 9, 2021
A4 cont: I may mentioned some things I do outside of in-network care but they don't really encourage me to keep doing it even though it's been working for me. #LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 9, 2021
We believe it’s important to give people their flowers while they’re around to smell them. Next we showed our biggest supporters some love!
Q5. Shout out someone and let them know how much you appreciate their love and support.
A5: OK shout out to the #LupusChat team @TiffanyAndLupus @Xtel007 @SynceNerd_Carli and @CaringForLupus for all the hard work you put in!!! It's so hard living with Lupus and ya'll are out here touching lives like the angels you are! May you be blessed tenfold what you give! https://t.co/6R28brINnx
— Bella Reeves (@bellaproduces) May 9, 2021
A5: And once again, @TiffanyandLupus. Listen, I’m not about to get on here and emote too much. You already know how I’m coming behind you. I trust you with my life. And I am forever grateful to have found you. Thank you. #LupusChat
— Carly by Nature (@SynceNerd_Carli) May 9, 2021
A5. Also, thank you so much to all the people that participates in #LupusChat. My English isn't perfect because it's not my main language, I'm portuguese, but I really feel amazing here. It's great to understand and feel so understood when I'm so far away from you all 💜 https://t.co/TfwrfwdyUV
— Sofia (@abssofia) May 9, 2021
A5. Shout out to @Tinarsjn. My sidechick, my person, alladat 💜#LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 9, 2021
A5: Right back at you @bellaproduces ! Our friendship means so much to me! #LupusChat
— Kate Sattler | Sweet Freeze (@katesattler) May 9, 2021
A5 : Thank you Annette for always being there and being the epitome of a friend. A true friend. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 9, 2021
Finally came our last question of the day!
Q6. Using the hashtag #OurLupusCommunity, please share how you will continue to honor your community support and share the impact that they've had on your life?
A6: We should take the time to give those who support us their flowers while they’re still here, especially those who are in #OurLupusCommunity. Let people know how much they’ve impacted your life. Let them know that them sharing their experiences resonated with you. #LupusChat pic.twitter.com/yB2MUkPBrx
— Tiffany (@TiffanyAndLupus) May 9, 2021
A6. I’m very grateful for my little circle, and I hope that they can tell by my words and actions how much they mean to me. #OurLupusCommunity #LupusChat pic.twitter.com/lhLaxKzQRr
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 9, 2021
A6. I will continue to be vocal about lupus. Lupus is still unknown to most people. Especially in a multicultural,mostly rural and diverse state like NM where it's difficult to find medical care,let alone find specialists in-state. #OurLupusCommunity #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 9, 2021
A6. This conversation helped remind me that #OurLupusCommunity is not just other people with Lupus. It’s family, friends, people we hang out with, the ones we interact with daily that make our journeys enjoyable and less lonely to navigate. #LupusChat pic.twitter.com/IZzSjLi3Yq
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 9, 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.