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Thatgirl

756d

Im just hoping to find people I can talk to about having Lupus. I feel like it gets a bit lonely, and it would be nice to have people to talk to about it all. (Not whining about it, just sharing common experiences and talking about everything.) I love my friends and family, they are always up for listening and being there, but it would be nice to not have to explain. I’ve had Lupus for about six years now, and I feel like I’ve learned a bit over that time. I am happy to try to help if I can. I am still no expert. What’s been the best thing to help you recover from a flare up ?

Top reply
    • karinad

      743d

      Hi! I made a discord channel for those specifically with autoimmune conditions to help each other out. you can join here: https://discord.gg/3hZt9vCwR5

    • karinad

      743d

      Hi! I made a discord channel for those specifically with autoimmune conditions to help each other out. you can join here: https://discord.gg/3hZt9vCwR5

    • Randa

      744d

      It's very lonely because nobody understands unless they go through it too. The worst is being told "i know someone else with lupus or fibromyalgia and they do more than you, youre just using it as an excuse" Got that from my mom. I have lost friends that say I'm not fun anymore, my husband said he is sick of hearing about it. I just stay quiet now

      • Thatgirl

        744d

        @Randa it is very tough disease with a wide spectrum that hard for people to understand, and is also a it’s difficult one to explain. I’m sorry your going through it

    • TreSc

      750d

      I have been kind of keeping to myself because I have just been diagnosed and I am still trying to understand my condition. I understand @Thatgirl what you mean by feeling a bit lonely.

    • Air82

      750d

      I have beem looking for someone who can understand. Not just say take meds its not that bad ugh

    • MsBailey

      753d

      I know the feeling...it's so hard to talk about it to someone who isn't living with it...the pain is not the same, the fatigue is not the same...none of it is comparable

    • Mariafbaby

      755d

      hey ! I used to be part of a Lupus support group, we used to meet in person. Try some online social groups like facebook there’s a facebook group for everything now, you can also reach out to me if you’d like I have Lupus Nephritis, my instagram is @madebymariaf my snapchat is @mariafbabyy it’s not quite the same but similar idea. Take your time and take care of yourself ❤️

    • NicoleAS

      755d

      I’m on here for the same! I was diagnosed in 2010- I’m actually having a flare right now, really the only thing I have found yo help, is to do nothing & just wait it out- it’s so hard though!!

      • TreSc

        750d

        @NicoleAS do you have triggers that get your flares going?

        • NicoleAS

          749d

          @TreSc probably stress… or doing too much. I did an art class w/ my husband & it had an over- stimulating atmosphere. And the previous day I had a job interview that was super uncomfortable & I got overly worked up about how awkward it was. Both things were minimal & normal/less than average situations but I get easily worked up. I haven’t mastered the art of finding a calm center! Lol

      • Thatgirl

        755d

        @NicoleAS yes it is hard, I’m glad you said that sometimes I feel lazy when I do nothing. I know it’s the right thing, but I feel like I should be doing something

        • NicoleAS

          754d

          @Thatgirl I know that feeling completely! I identify my value in life, by my productivity (unhealthy as that is) so my brain rarely lets me feel peace about doing nothing. My husband has reassured me by reminding me that a “lazy person” has no issue being lazy- therefore I must not be a lazy person! Lol thank goodness for Netflix & documentaries! A shower & warm bath- can also provide some relief, but sometimes that is even too hard

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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