Life Lessons | #LupusTaughtMe
Life Lessons
#LupusTaughtMe
May 30th - 3PM EST
The #LupusChat Influencers
Welcome to the #LupusChat recap! 37 participants joined us on May 30th, 2021 and made their voices heard, generating 910 tweets and 5.837 million impressions.
We ended Lupus Awareness Month by discussing the ways chronic illness has changed our perspective and how we navigate life. Together, we illuminated the lessons we’ve learned throughout our Lupus journey.
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 our favorite scent. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
My name is shiffon and I’m from the Bronx, but now live in LA. I was diagnosed with lupus in 09 Nd nephritis in 2015. My favorite scent is RAW ONIONS (is that weird 😂)#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 30, 2021
Catching up with #LupusChat after a COVID test and errands. Ivey Janette,Albuquerque. Battling and surviving lupus and lupus nephritis since 1995. Favorite scents are vanilla and rose.
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 30, 2021
Hey everyone! Raquel in College Station,TX and I am enjoying a 4day weekend. My favorite scent is a tie between coffee and oranges/citrus smell. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 30, 2021
Hello! I'm Bella from NJ. I was diagnosed with Lupus in 2016. My favorite scent is my mom’s or grandmom’s food!! #LupusChat https://t.co/W9CJcObDKB
— Bella Reeves (@bellaproduces) May 30, 2021
Greetings all! I am from CT. Lupus remission 8yrs. Lately my favorite scent has been Jasmine. 😊#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 30, 2021
Hey #LupusChat! Here Sofia from Portugal. Not sure if they are my favorite but I love the scent of fresh paint and nail polish 😂😂😂 https://t.co/DEEG9WOIZL
— Sofia (@abssofia) May 30, 2021
Then we began with question 1.
Q1. What is something you know about chronic illness now that you wish you knew when or before you were diagnosed?
A1: I wish I knew about the complimentary therapies that work for me and foods to avoid when diagnosed. I feel like I would have had better progress toward remission sooner.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 30, 2021
A1 wish I had known what to look for. So many things were happening for yrs before I sought medical attention. By then I was good and sick.
— staff of one (@hand_to_eye) May 30, 2021
Also that I would get little help from loved ones.
#LupusChat
A1. How common it is to have more than one. There are so many types of chronic illness and so many go hand-in-hand with another #LupusChat https://t.co/6yUhcrWoHf
— MikeyMoozer bIm (@MikeyMoozer) May 30, 2021
A1 I wish I knew about Lupus before Miah's diagnosis.
— Caring For Lupus (@CaringForLupus) May 30, 2021
Because we didn't know the rash was a symptom, it took us two years to get the proper diagnosis#LupusChat https://t.co/rqkYHeOvCx
A1: I didn't really take into account that "chronic" part. The sustaining effects. I thought "treatment & I'll be good." I didn't know I would need to be so diligent about my mental & emotional wellness. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 30, 2021
Yes, been thinking about this a lot. It's everything, the quality of our air, water, food, hygiene/cosmetics, etc not to mention mental health & well-being, social support, etc #LupusChat
— UMass Lupus (@UMassLupus) May 30, 2021
There are so many things we all wish we knew early on. We’re grateful to have learned them along the way. For Question 2 we focused on how this knowledge helped us.
Q2. How has living with Lupus and/or chronic illness led you to be more in tune with your body and emotions?
A2: It has led me to be more honest and proactive about what is going on with me. I've always been in tune with my body and emotions...I just would deny and pretend. A lot. Most of the time lol. #LupusChat https://t.co/Fo6lCHhfPk
— RaquelRoschell (@raquelonpurpose) May 30, 2021
A2: Well, simply put, my motivator was to stop feeling all that pain. So I said, hmmm, what can I do to avoid these flares? That's where I began to think of the foods I was eating, paying attention to how I felt after exercise, a day of activity, etc.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 30, 2021
A2. I pay attention to my body more seriously. I notice any pain right away. And try to rest as much as possible. And to NOT overdo it! #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) May 30, 2021
A2: I felt like becoming in tune w my body/emotions was life & death. I was just plowing thru life as things got worse & worse until I was I was stuck in bed for a few years - forced to reevaluate. Now I am happy to listen to myself to prevent pain as much as possible #LupusChat https://t.co/1575mLAdU9
— Bella Reeves (@bellaproduces) May 30, 2021
A2 (continued). I used to have unexpected horrible flares every week or two, and now its about once every month or two. My bad flares vary from a few days to almost a month long. But now I know better how to care for myself through them #LupusChat
— MikeyMoozer bIm (@MikeyMoozer) May 30, 2021
A2: I learned to be more careful, know my limits and pay attention to all I feel. Also, when there's something wrong with my body and mind it reflects in a pain that's really hard to handle and not that "normal" pain I live with always #LupusChat https://t.co/KxzNPxcrZC
— Sofia (@abssofia) May 30, 2021
We believe it is important to share what we’ve learned with others in the community. For Question 3, we discussed tips for those also impacted by chronic illness.
Q3. Can you share some advice or guidance that you've found valuable from someone also living with Lupus, disability, and/or chronic illness?
A3: sharing some info: For affording meds, many drug companies have foundations or patient assistance programshttps://t.co/WZFhtYLUkY 💊💉#LupusChat
— UMass Lupus (@UMassLupus) May 30, 2021
Yea it's difficult sometimes and this is one reason #LupusChat is so important to me as a community resource.
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 30, 2021
A3 (continued, final). The love from the self-dx community online has helped me process all of this crap I had to go through for a formal diagnosis. Self diagnosis is valid and completely acceptable. Ill fight anyone who thinks otherwise
— MikeyMoozer bIm (@MikeyMoozer) May 30, 2021
A3: A friend of mine named Jess who had POTS (Postural orthostatic tachycardia syndrome) encouraged me to ask my doctor for a referral for physical therapy. She told me that’s where I could receive treatment for my chronic pain. #LupusChat
— Tiffany (@TiffanyAndLupus) May 30, 2021
2- You can still achieve a great deal of your goals and dreams, but the path and timetable may change, and that's fine.
— Tinu, Empress of Twerk, Thirst of My Line. (@Tinu) May 30, 2021
3- It okay to grieve what you've lost however. You may grieve every few months or years. #LupusChat
When possible, many of us have to be self-sufficient. That said, in Question 4 we examined how life with chronic illness has impacted our ability to do so.
Q4. What has your life with lupus, chronic illness, and/or disability taught you about the importance of learning how to support yourself?
A4: because once again, WE DON’T LOOK SICK, soo being the best advocate for yourself is a must, to be able to communicate all of our pains and aches #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 30, 2021
A4: lupus taught me it’s not selfish to care for yourself bc You can’t care for anyone when your too ill. Many of my relationships suffered because my relationship with myself was broken (even b4 lupus) In a way this was a gift of lupus. My relationships got stronger #LupusChat https://t.co/mjwtdXJ7Kd
— Bella Reeves (@bellaproduces) May 30, 2021
A4. It also taught me that no one does it alone, and that's one of the great things in life.
— Tinu, Empress of Twerk, Thirst of My Line. (@Tinu) May 30, 2021
My communities are so important. For support, resources, to feel useful by contributing what I can. #LupusChat
A4: Although I have amazing people around,very supportive, in the end of the day it's just me there,leading with the pain. When painsomnia hits, it's just me there. So how can I handle living like this if I don't support myself, care about or believe in me? I have to💜 #LupusChat https://t.co/mZ1r5cgGVH
— Sofia (@abssofia) May 30, 2021
A4. I often had to rely on myself instead of waiting for someone to help out. I'm a workaholic to begin with;and I've had to get used to not going to work every day and/or not working a 30-40 hour week. I now have to focus on MYSELF first. #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) May 30, 2021
Not only is our physical well-being important but both our emotional and mental state must be healthy. We explored what that has meant since we’ve learned of our diagnosis.
Q5. Not only is our physical well-being important but both our emotional and mental state must be healthy. Let’s explore what that has meant since we’ve learned of our diagnosis.
A5: I think about this a lot tbh. I think I'm pretty high on the happiness/contented scale & I get asked a lot about it. For reasons to lengthy for this dot com, honoring/appreciating/valuing each day stays top of mind awareness & it's hard to *not* be 👍🏽v. that #LupusChat
— 🧼✋🏽🤚🏽BBG😷🆙 (@TheBigBrownGirl) May 30, 2021
A5: I’ve learned that living with lupus, my happiness will come with a lil scars on the edges but hey anything to have a lil break??#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 30, 2021
A5. I learned that "happiness" can take many forms. And that I need to learn to find joy outside of just things that were it for me pre-Lupus. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 30, 2021
A5: I learned that you can find huge happiness in things lot of people see as little or guaranteed. I feel so happy when I can go outside, see me trees, feel the grass. So grateful! Happy to see my friends, hug my family and laugh with them although the pain is there #LupusChat https://t.co/YzL8Ms7jK2
— Sofia (@abssofia) May 30, 2021
A5: I’ve learned to treasure the little joys that life brings. I try to enjoy the things that bring me happiness regardless of how big or small they are. I do my best to find a silver lining and have at least one little burst of joy to carry me through my day. #LupusChat
— Tiffany (@TiffanyAndLupus) May 30, 2021
A5: I had to learn what brought me joy, that allowed me to feel good to "lose track of time" and forget all the worries. These joys allowed me to feel and be my best self.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 30, 2021
Finally came our last question of the day!
Q6. Using the hashtag #LupusTaughtMe, can you reveal some other life lessons you've picked up while living with Lupus and/or chronic illness?
#LupusTaughtMe that listening to what my body needs is essential for my health and well-being. It’s no longer my responsibility to convince others that what I’m going through is real and can be extremely difficult! #LupusChat
— April (@aprilgrace1727) May 31, 2021
#LupusTaughtMe to be less guilty about my choices. That what I do for my well-being and happiness are important and necessary, and I can't waste my energy thinking about how others feel about it. #LupusChat pic.twitter.com/MqgrbUd0Cc
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 30, 2021
A6. #LupusTaughtMe to be strong. To focus on myself first. To not stress out over small things,especially in the last year. To rest. To take care of myself mentally and physically. #LupusChat
— Ivey McClelland(she/her)❤❤❤ (@iveyjanette_207) May 30, 2021
A6. #LupusTaughtMe to really appreciate the good days and be strong and ready for the bad ones. #lupuschat https://t.co/5EqAcIhlmM
— MarDontKnow (@MarTG993) May 30, 2021
A6 Miah says: Lupus taught me that it is important to listen to your body....otherwise you can crash 😬 and it might take longer for your body to recuperate.#LupusChat https://t.co/I8yhHAYXBN pic.twitter.com/xfnR1txKff
— Caring For Lupus (@CaringForLupus) May 30, 2021
A6: #LupusTaughtMe the importance of putting myself first. I couldn't rely on people to always grasp what I was going through. Some didn't even care yet had their own selfish reasons. Lupus also taught me the value of living a balanced life.#LupusChat
— Netert Aset Re 🌞 (@NetertAsetRe) May 30, 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.