I’ve heard of others on this subreddit having loved ones and friends misunderstand their lupus and make them feel like shit about it… I luckily have not had any interactions like that up until tonight.

My husbands lifelong best friend has also become one of my closest friends since moving to my husbands city 2 hours away from my home town. He’s someone I allow myself to hangout with even when I’m not feeling totally up to it energy wise, because I trust him and feel comfortable in his presence. But I do often opt out because, well, lupus like to take all my spoons and I need to rest.

Tonight we (my husband, myself, and our friend) were playing “we’re not really strangers” and we got to the third level which is the deepest level of questions. We got “what do you think the other person needs to let go of”. Our friend told my husband he needs to let go of his perfectionism, I told my husband he needs to let go of him feeling like a burden when he needs extra emotional support. And then our friend told me I needed to “let go of identifying with my disability”. And I was like “huh.. okay let’s hear him out, where is this gonna go.” He told me that I needed to not let it control how I navigate the world and if I’m having a worse day to just push myself to do more. He said it makes a world of difference when he pushes himself to brush his teeth even when he couldn’t bother to. How even when I’m having a bad day maybe just hangout with people anyway because I’m bigger than my illness and don’t have to identify with it. Something along those lines.

While he was going on I felt myself holding back tears and shaking. I never felt so misunderstood, shocked, dismissed and invalidated by someone who I know means well. I just couldn’t understand why he thought that was good advice. It took a lot in me to tell myself to forget it so I could answer the question for him, which I told him to let go of fearing vulnerability in relationships. To which he took well. Then I said I needed to go to bed. Since this was happening at our house.

I went to shower and immediately broke down crying. I kept thinking about “this is exactly the stuff I read other people talk about on r/lupus, how they feel so invalidated and misunderstood by the people who are close to them.. I did not expect it to be him. I expected more..” he basically just assumed what lupus was like (he was talking about it like it was depression) and was telling me to push myself and be stronger. It made me feel so dismissed. I would expect people close to me to ask questions to try to understand lupus more instead of assuming. Also for him to give me advice on something he knows nothing about.. everything about it felt awful.

So in the shower I was running through my head if I could carry on our friendship as normal if i never brought this up again.. the answer to that was no definitely not. I would assume he just thought I wasn’t trying hard enough whenever I would cancel plans, that if I post awareness about it on social media that he would think I’m milking my disability as a personality trait instead of a chronic illness.. I would just feel so misunderstood and distant from him and that feels awful. So that left me with the conclusion that I had to say something, I have faith he will be open to seeing that he hurt my feelings.

So this was super difficult for me, I bring up my inability to stand up for myself and speak up to every therapist I have because I need help having a back bone. And I thought if there’s anyone I can practice sticking up for myself with it’s with our friend, I trust he’s a good person and will handle it calmly. So I took my shower, got dressed, and walked out to the couch where our friend and my husband were sitting. I immediately started to cry.. because of my social anxiety and fear of confrontation, this was so scary for me. I had a whole script I would open up with but that went out the window because the tears came first. So I said “I’m sorry I’m holding in tears right now” cried a little then said “I just wanted to say something so I didn’t feel so misunderstood and I trust that you meant well I just feel really dismissed in my experience with lupus after hearing your answer for me” and he immediately locked in and was ready to talk about it. He told me all the things he misunderstood, how he was being shallow (his words!!), how he was speaking on something he knew nothing about, how it looks from the outside and how he can see how he got that wrong and where his wrong perspective comes from because he only knows me as my masking self so he assumes my lupus isn’t that bad. He says everytime he sees me I present the same way, and so he assumes my baseline is really good and I’m just using my lupus as a cop out to not hang sometimes. And I thought damn so many people on the lupus subreddit struggle with friends saying the same stuff to them I never thought it would be one of my own too. He admitted that he was totally wrong on giving advice that he knew nothing about. My husband chimed in many times saying “you know when you gave your answer telling her to do more, I had the complete opposite reaction, I wanted to tell her to do LESS, to identify with her lupus MORE, because I see how much she pushes herself”. And I was like holy shit that is so validating he sees me, he doesn’t blame me. My husband also said “she is so good at masking her pain sometimes I forget she’s in the middle of a flare when we’re around others. You have definitely seen her on some of her worst days and she still had a smile on her face so you wouldn’t see it”. And I said “yeah something about others seeing me sad or in pain makes me incredibly uncomfortable, so I am always smiling otherwise id cry if they noticed” lol.

So we had a very lengthy (about 45 mins) conversation about how he’s owning up to misunderstanding me, and how my lupus affects my life. And we hugged and said I love you. And I’m just super grateful I felt brave enough to say something, because that moment would’ve haunted me forever if I didn’t stick up for myself. And I would’ve held resentment against him for downplaying the hardest thing I’ve ever been through in my life and it would’ve ruined how happy I feel whenever we hangout and our friendship. I had all the faith in him that he would be mature at receiving that conversation and he definitely delivered. And I’m so glad that I got to experience sticking up for myself so I can feel stronger and more confident sticking up for myself in the future.

Sorry for rambling it’s 3:30am here and I’m way past my bedtime. I just wanted to share this before brain fog made me forget more details. And hopefully it’s cohesive enough to read. Hopefully me sharing this story encourages others to stand up for themselves too. And to allow yourself to own your lupus diagnosis MORE. Thank you for reading!

TLDR: my friend misunderstood how lupus affects me and tried giving me advice to just push myself more. I mustered up the courage to stand up for myself and tell him he was wrong in that advice and how it made me feel dismissed. He took it really well.

I have SLE lupus and clearly am still in a flare. I take medication for it, but I am just ugh. I’m sorry, I’m just really sick of it. My job is stressful, my living environment is like walking on eggshells, and honestly it’s probably making my symptoms worse. I feel so defeated.

Hi! I started hydroxychloroquine this winter and it has been a game changer for my health. However I live at the beach and now that it is sunny and hot consistently again I am in agony! The sun sensitivity is real and it feels like someone is using a needles to prick every nerve in my body when in the sun and long after exposure. I can't sleep at all after sun exposure I am in so much pain. Has this happened to anyone else? Any advice? I am on 400mg a day.

Hello everyone! I hope you’re all having a good day! 😊

I’m unable to speak with my doctor for a little while unfortunately but I had to take some antibiotics (penicillin of some sort) to fight off a minor tooth infection before I was able to have a tooth pulled last week, and ever since about day 2 of the antibiotics I’ve been riddled with mouth ulcers and had on/off rashes on my face that were similar in shape to the infamous malar rash. I suppose I’m just wondering if it’s possible that the antibiotics could have triggered a flare of some sort? Has anyone else experienced something similar?

Finally made it to Benlysta, in time for my worst flare I’ve ever had but I’m so very new to this. On day 9, I am so out of breath, weak, but I can tell the B shot helped me because my body doesn’t look as red. I don’t know if I should call my rheumatologist tomorrow but I think 6 days of being bedridden would necessitate a doc appt? I don’t think B and HQC is enough or am I crazy?

I have things I need to do and my world is already so diminished by limited social activities that I woke up super emotional and sad today. Trying to keep from sobbing just typing this. Which might be a side effect of the shot, I believe. I’m literally over here wanting to cry over friendships I lost 10 years ago. wtf

Please tell me your experience with your B shot side effects and how long until you felt the medicine helped you in a marginal way that moved the needle for you? (They switched me to this because of exhaustion.)

This is NOT an advertisement for any supplement

So I keep having Fodzyme advertised to me on Zuck-related SM, thank you algorithm. Probably because I continually advise people to keep a food diary for symptoms, and I do that because I now know gluten, tomatoes, mushrooms and bleu cheese cause immediate flares for me.

Before I throw money away and gamble with causing a flare, has anyone tried it on one of their no-no foods? Even if I couldn’t do gluten, I’ve been gluten free for 13ish years (never diagnosed as celiac, but definitely a flare trigger). But I sure would like to get tomatoes back (most recent discovery, triggers lupus and gout flares), they are in everything I love.

Anyone tried it? Did it help any or not at all? Thank you!

Hey guys, I am diagnosed with SLE and wanted to share something that helped me. For the past 10 years I was feeling so physically and mentally exhausted. So much to the point where I was on the highest dosage of stimulants and even began taking medication for narcolepsy/shift work disorder —and even that didn’t work so I stopped.

Almost three months ago I completely cut meat out of my diet, just randomly. Within the first week, I noticed the mental exhaustion fading and the physical exhaustion soon went away.

I’ve always eaten a pretty balanced diet, but since cutting out meat..I’ve mainly been eating more fruit and vegetables and I feel like the inflammation is gone.

I’m not a nutritionist, but going vegetarian has shown me more results than the long ass time of being on hydroxychloroquine ever has.

Just thought I’d share with you in case you’re wanting to give it a shot.

Hi. I was just discharged from the hospital yesterday after having a moderate pericardial effusion and pericarditis secondary to lupus. I was treated with 3 days of IV pulse steroids (1000 mg) and sent home on prednisone. Has anyone everyone been treated with high dose steroids like this? Is it normal to still experience pain after such an aggressive treatment? I’ve had pericarditis in the past but was never admitted. In my 20s I remember being on NSAIDs and in 2020 I was treated with colchicine. I am just trying to get a sense of what the next few months are going to look like because my anxiety is sky high.

Hi! I’m 28 and I’ve been dealing with Lupus for 6 years. I’ve tried everything there is besides Saphnelo & Benlysta infusions because I have multiple AI diseases going on. Lupus & Sjögren’s are the worst for me. Has anyone had success with these infusions? Any side effects?

New here, need advice

I'm diagnosed SLE. Can it turn into Lupus nephritis? For a month now, my kidneys have been hurting. Absolutely nothing has helped. Multiple ER visits. The only marker that is high is my inflammation. It's through the roof and has been for over a month. I've been urinating blood. My RA appointment is Monday the 7th.

What tests can I ask for to see if it's evolved to that?

I also have multiple autoimmune syndrome. I have 4 autoimmune diseases...5 if you count fibro (not autoimmune but treated like one)

I am 20 y/o female with lupus

I am losing my will to live, I’m like basically bed ridden. I can’t get out of my bed, can’t eat, can’t leave my house without feeling like shit. I have no energy like genuinely at all, I feel like shit every single day. What’s the point of living if every day I’m going to be in pain. I almost wish I just lived in a hospital so I can numb the pain and lay in bed all day. I feel like I can’t do anything without feeling sick but then again if have no energy to do anything. I’m exhausted all the time I can’t even clean or do ky laundry.

Hi, I’ve got SLE + DLE and I’m really struggling with dry skin atm. Do you have a fav nourishing body moisturiser you’d recommend? Tia

I feel like no one in my life understands what we go through with this disease. The pain, financial struggles, not wanting to complain. Wanting to do normal things, but physically or mentally not being able to. I feel like I have no one that knows every aspect of the struggles.

What are some things you do that help you in your daily life living with lupus? How do you cope with feeling lonely or defeated?

Hello,

After being a super outdoorsy child and growing up in a tropical climate, I've had to accept that with the lupus I'm now extremely photosensitive. All the lupus info I've seen on sunscreens has been US-based, and they tend to recommend mineral sunscreens only. Is this just because US sunscreens are terrible, or is there a particular reason why? I live in Europe and have access to amazing European and Korean sunscreens and would hate to have to make the switch...

It's been 12 years of confusion, unexplained symptoms, fighting doctors, and lots of pain. Finally found a doctor who LISTENED (after dozens who certainly didn't), and today, we officially confirmed after lots of testing, that I, in fact, have lupus.

I'm honestly relieved that I have an answer now, and we spent an hour coming up with a game plan. Meds, follow ups, additional testing, iets, lifestyle changes... The works!

So... Hi everyone! 😁 Could you all please leave your best tips or suggestions on how to make sure live my best life with lupus? Thank you all in advance. I'm grateful to have a community like this. I am remaining positive and hopeful! 🌞

Idk if this is the stupidest thing in the world, but is it possible to build up tolerance to the sun?

I used to be such a sunshine child and I know it sounds stupid but when it’s beautiful out and I can’t go out it really hurts my mental health. I just feel like I need the sun. I crave it. But if I go in I get a massive red rash especially malar. It burns and blisters and is the worst.

But is there anyway to grow a tolerance like a tan? Could I be miserable for a could weeks and then work to enjoy outdoors again? I feel like I’m losing my mind indoors and don’t know what to do.

Hi all,

I’m not sure where or who to ask, so I thought maybe this might be a good place. Hopefully it’s okay to post as a family member. I obviously don’t want to go into his personal history, but suffice to say it’s been years of him feeling wrong, and it escalated to a point where a doctor finally took him seriously to test for lupus. Confirmed yesterday. I can only imagine what he’s going through.

I’m posting because I just… don’t know what the best or right things to do for him are. I’m worried for his physical and mental health, I’m worried for the future, I’m just generally feeling uncertain. But this also isn’t about me. I committed to this in sickness and in health. It’s good that these symptoms have a name - but now what?

I know illness is personal and everyone is different in the support they need so there’s no “right” way to do things, and I am talking to him about it, but… what would you want a partner to do, or know, about your diagnosis? When you were diagnosed, is there anything you wish your partner had or hadn’t done? Going forward, how can a partner help? I love this man. We’re nearing 15 years together and whatever the future looks like, I want to be the most supportive that I can.

Hopefully that made sense? Up until yesterday the only thing I knew about lupus was that “it’s never lupus”, per HouseMD. I’ve got a lot to learn, so literally any nugget of advice or random tip would be appreciated a lot.

Has this happened to anyone else? I’m so confused!! 😵‍💫

I use the same products every single night. Cerave (face wash, under eye cream, retinol) for years, and vanicream moisturizer for the past 4 months.

But tonight, I have chemical burns on my face from it. (I’m fine, I’m just like wtf😅)

Are there products or ingredients we’re supposed to avoid? Has this happened to anyone here?

Thx 😅

I’ve been taking HCL 200mg for three months now. I noticed something happening to my nail. The rheumatologist thinks I just hit it on something but i swear I didn’t. It’s so painful and it has a crack in the white space

my partner used to be very understanding but has since forgotten it feels like that i am sick, in pain, and out of it constantly. because my doctors won’t put me on biologics yet i am still struggling very hard every day. most days i don’t want to get out of bed but i do. he has adhd and has trouble doing tasks. so my home is constantly a mess. i try to juggle the mess the best i can, i can be a mess too. and i try dealing with the mess gradually and as much as i can throughout the day. some days i just don’t feel great and am in a lot of pain. and those days are when my place gets messy because i can’t function well enough to do the laundry or vacuum up heaps of dog fur all day long. i do pretty much everything. today he decided to clean the laundry area and told me i need to manage it better and finish cleaning up the soil i spilt (the laundry is in the garage) on the floor in there too. he had cleaned most of it and he cleaned the laundry area. it’s hard for me to even think of the dryer sheets that fell on the floor or the jugs of washing liquid i need to throw away because i have so much inside of my house to clean everyday. there are things i say i will come back and do that and i totally forget to do it because my mind becomes occupied with new things to clean up or do. do any of you have partners with adhd? how can i make him understand my brain is fuzzy and my body is failing me? how can i ask him for help managing tasks with me so i’m not doing it alone? i always try to help him with things he needs to do but it’s really hard for me to get him to help me with anything i need help with. it’s hard for him to just do the dishes before they pile up because his head is somewhere else. i don’t know what to do, any advice?

I started methotrexate and apparently, you're not supposed to take NSAIDs and methotrexate together, but I find NSAIDs help period pain the most. I'm trying Tylenol, but it's not as effective as Ibuprofen in my experience.

Medication-only recommendations if possible, please! I don't smoke, and oils don't work for me. Alternatively, do any of you also on methotrexate take NSAIDs just fine?

Yesterday, I actually had a high-grade fever when I woke up, but shockingly I didn't feel anything much - no cold sweat or chills, which were some of the symptoms I experienced previously. Only symptoms - which I looked past was the tiredness and muscle ache and tenderness throughout my whole body which had actually been going on for about a week (chalked it lupus things). My husband and I only realised when he hugged me, and got a shock at how hot my body temp was. Anyone experienced similar before? It's kind of scary how we patients normalised these feelings, to the point we just brush it off even though it could be something more iffy.

Well this was a new life changing information I just received from a close colleague! Amazing news, we dont need muscle relaxants and painkillers. Just try the Shavsana yoga pose! Aka lie down flat on your back and close your eyes - magic! Why couldnt all the specialists have told me this sooner, game changing you know

Jokes aside, how the fluff do I react to comments like this? A close colleague literally told me to try the corpse pose / shavsana instead of taking my meds...