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Thatgirl's Post
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Thatgirl

2y ago

Looking for Lupus Support

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 ?

Your answer

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karinad

2y ago

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
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Randa

2y ago

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
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Thatgirl

2y ago

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
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TreSc

2y ago

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.
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Air82

2y ago

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

2y ago

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
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Mariafbaby

2y ago

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 ❤️
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NicoleAS

2y ago

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!!
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TreSc

2y ago

do you have triggers that get your flares going?
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Thatgirl

2y ago

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

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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