Sorry I know this probably doesn't seem like that big of a deal, but EVERYONE I have told I have lupus (excluding my bestie) ALWAYS say something along the lines of "well it's manageable you'll be fine". And I can understand that they might just be trying to be comforting but it feels like it's not being taken seriously or it's just a minor issue. Someone even told me that it can just be managed by a good diet and I'll have no symptoms if I diet right! And it's so frustrating because I got diagnosed like a month ago and I'm trying to come to terms with the fact I have a literal incurable disease. And now that I know that it's lupus I understand why I'm struggling so much but somehow it feels like people brush off my pain and symptoms more now? I dunno it's just very frustrating and I'm wondering if other people deal with this too? And if so how they deal with it?

Edit: Hey guys, I appreciate all of the recommendations and you guys sharing your experiences! It's nice to just kinda feel understood :) I'm kinda new to this like I mentioned, I got diagnosed a month ago tho I've been dealing with symptoms for over 2 years now and I'm 17 (almost 18) and it's just kinda been a lot to handle so I appreciate the support 🫶

Yep. That’s it, that’s the post.

I moved up my appointment time because within the last week I have had a surge in cognitive dysfunction that has started to interfere with my college education. I told my doctor’s assistant exactly what’s happening. Mind you, I already messaged my rheum days prior about this new feeling. Before she spoke to me in person about it, based on what her PA told her, she decided I’m not having lupus brain fog, because “lupus doesn’t cause brain fog”. It’s because I’m depressed/anxious. I, after spending days reading the lupus encyclopedia and lupus.org articles that directly contradict her, sat there floored. Ive had mental health issues for literal years, longer than I’ve had lupus and it has NEVER affected me like this.

I’ve posted about how I need a new rheumatologist before but because of this potentially urgent issue, I thought I’d wait on it so I could get help sooner. What a silly mistake that was. Her main focus of the appointment was how to get me on ozempic for weight loss (which is important but not the most emergent issue I thought???) and to let her know in a couple weeks how I’m doing because once my prozac kicks in, I should be better. She DID give me a referral to psychiatry and for cognitive functioning tests which could be helpful, but it was just the nonchalant attitude and the blatant disinformation that got me. I’m scared. I KNOW something is wrong. I just felt so weak and defeated in that moment I left without saying much else.

It’s not enough that we have to deal with this disease, we have to deal with doctors that show such little concern for genuine fear and concern when you’re clearly distraught. The funny thing is, her name is on the lupus.org website. You know what else is on the lupus.org website? A WHOLE PAGE DEDICATED TO COGNITIVE EFFECTS OF LUPUS, SPECIFICALLY BRAIN FOG. Even if it’s NOT lupus causing brain fog, there’s something going on, beyond me being a little more anxious than I’ve been historically.

Does anyone else get completely fed up all the time when the people around you just tell you that you would be okay if you just drank more water or ate better? I’m so sick of people not understanding how this affects me everyday. I want to a family get together yesterday and felt fine but today I have been stuck in bed all day with a headache, low grade fever, and being shaky. You know what my family said? “Well maybe you shouldn’t DoorDash so much and drink more water.” Sorry I am so sick right now that I can’t even fathom the idea of making myself a whole meal!! I am so so infuriated. Am I in the wrong here? I’d really appreciate some support if any of you all could help out.

So sick of hearing this phrase!! I’ve had my own experiences, seen sooo many stories on here and on other lupus forums and it just seems to be happening everywhere 🙄🙄🙄 my eyes can’t roll further back in my head!!! It’s dismissive, frustrating, and downright dangerous in many cases!

Feel free to vent your frustrations below 😂

Pleurisy alone makes it sound like I need to move to the country and breathe fresh air to heal from.

Does anyone else get really, REALLY frustrated when people use lupus as a joke for whatever reason? It is exhausting and makes me more frustrated than basically anything else. The “it’s never lupus” jokes (thanks house) and other specific things i’ve seen almost making fun of people with lupus or who talk about lupus and it just makes my want to cry because we deal with enough already, it’s not a joke. Sorry, just venting, saw someone joke about their roommate who “never shuts up” about lupus and it really just made me want to give up

EDIT: I really shouldn’t have used the house example lol, because now everyone thinks it’s all about that. That one really doesn’t bother me, it’s just kinda boring. I make jokes about my own lupus all the time- it’s how I get through! I’m talking about the people who actively shit on people with lupus for one reason or another thinking it’s “funny” the same way they might shit on someone for any other disorder they don’t understand

She said she was perplexed by I’d need accommodations, especially flexible hours or work from home because she has rheumatoid arthritis and comes to work during flares. I freaking hate it here lol

She’s gonna ask my manager if my job is compatible with that accommodation. I said someone in my same position WFH all the time. Said it’s a case by case basis and she can’t promise LOL GIRL.

Hello, my girlfriend of 8 months is having another lupus flare on the day of a concert we were both suppose to go to. She's been very upfront about her ailment and her health with me since we first began dating and I'm trying my best to support her (refraining from long walks, staying out of the sun, etc.)

Lately she's been having more and more flare ups and its been devestating for me. Honestly, none of the events or dates that have been cancelled have bothered me all too much but whenever I see her in pain or when I hear how disappointed she is in not being able to go some where my heart just breaks. She seems use to this since she's been dealing with this since her early 20's but I feel so heart broken to the point i'm tearing up whenever I see it.

I want her to be able to do the things she wants, to be as active and see the world as much as she wants without being in pain or afraid a flare up might happen. It fucking blows that someone so special to me is going through so much pain and its killing me inside. I would never tell her this since I'm scared she'd blame herself or hate herself for having lupus and that's the last thing I want.

I know its dumb, i'm probably taking this a lot harder than she is at this point and I don't want to emotionally burden her with my feelings right now since I don't want her to blame herself. It just feels so unfair and unjustified for people to go through such a disease like this and my heart goes out to all of you. I hope someone is able to find a cure one day.

It's just awkward. I never know how to answer.

Ramadan Kareem everyone, let's keep our faith and devotion to Allah high always. Inshallah <3

So today was the first day of Ramadan, and I tried to see the possibility of fasting today, and it went completely downhill.

I kept an alarm for Suhur but was unable to wake up and take my meds (1st red flag), but neverthless decided to fast.

About one hour from when I woke up, half my energy was drained. I was preparing for my finals, and I could just feel the motivation drop and drop (2nd red flag). About two hours later, I was absolutely drained and just couldn't do anything, so I took a nap for about 3 hours.

Also, I started getting this horrible headache, which got worse and worse throughout the day.

I woke up and called my mom, telling her the situation. She said if I wanted to, I could break the fast (3rd red flag), but I declined and said that I could keep going. My mom came back home shortly after and insisted that I break my fast because I just look tired as hell, but I still insisted on keeping going (4th red flag).

I took another nap again, and by the time I woke up it was iftar time. As soon as I took the first bite, it just didn't digest (5th red flag). I told her that when I eat, I feel nauseous but ate whatever I could and some juice.

Iftar was over, and in 5 minutes I was in the washroom and throwing up my first half of food I ate. Half an hour later, the other half followed by.

I also noticed that as the day went on, my urine color got darker and darker. Also, I'm wondering whether my headache was a flare-up or is it just because I didn't eat?

After a discussion with my parents, we decided it was best that I don't fast at all until I am in the remission period where it is manageable. It disheartens me alot, as I used to fast when I was as young as 6 or 7 years old, and now stopping something I have been doing for many years is just stopped because of my conditions, which just upsets me.

Guys this is your sign to not fast until approval from your rheum and take care of yourself x

In a conversation tonight talking about lupus flares my MIL says "You will have one one day and you need to be prepared".

I have told this woman SO MANY times when I'm having a flare and how shit I feel, even during the absolute monstrosity flare that came after giving birth and rendered me unable to walk. Clearly she doesn't believe me, or doesn't notice, or forgot, or is just is plain ignorant.

Do I need to be on the floor collapsed or shouting in pain for someone to take me fucking seriously? Even my partner doesn't seem to notice, or offer to help, even when I tell him I think it's a flare.

I think people think "oh you're up and about, you can't be THAT ill". But what's the alternative mate? Living in my bed, neglecting my child?

Anyway, hope your family are a bit more supportive than mine.

I am in the mental boat of what is there to even really live for. I feel like being alive at this point is to just wait for the next debilitating flare, and I am very much over it. I do not want to continue living if it is to just be in insufferable pain. But when you try to tell that to others it's "oh you'll get through this. You're strong. It's just a minor set back." But they don't know how everybday feels like an eternity of torture. I'm tired and just want it to stop.

I've been doing this for 3 years now and while I understand the encouragement to not be afraid to enjoy things, have hobbies, try to live whatever normal looks like for me....and not letting Lupus consume me...... I feel like I'm lying to myself or denying that it is.....

How can I not let it consume me when I look at my calendar and all there is is appointments, blood tests....constant calls, constant voicemails left by doctors or nurses.....

I feel like I have to be ready at all times to get a phone call from my doctors or nurses....

My meds are constantly changing due to the complexity of what I have.....

I can just look at my damn calendar and it's filled with dealing with Lupus (I have Lupus Nephritis).

Last week..... they called me and said I had to do a blood test.....did it and then they called AGAIN and said I needed to do another blood test the next day.....

This week, went to a different hospital than the one I go to (yay me! I see renal doctors in one hospital and a rheumatologist in an ENTIRELY different hospital!!!!).

I had the nurse call me again saying the Dr wants me to take another test because I have low phosphates. Wooooo. She said if I'm not feeling well I have to go to damn EMERGENCY DEPARTMENT because what I have with the low phosphate is life threatening. GREAT.....another condition.

They also want me to pay 80 dollars for another medication for low phosphates.... and I'm like I ain't got it...ain't no way.

I take 21 meds a day/Night..... yes. 21. I have to keep up with it every single day or I put my kidneys at risk.

I have to do another blood test next week..... they upped my dosage of tacrolimus....take 3 in the morning....3 at night..... get a call saying my tacro levels are low. They ask me over and over if I'm taking the correct dosage...... and I want to fucking scream. Like I'm doing what you're telling me to do.

Just got another call from the doctor....have to go to the hospital today to get phosphates and I'm praying it's cheaper than 80 dollars.

I have another blood test to do next week....and will probably get another call about that if levels are low.....

Then after that another renal appointment......

Oh, and a cyclone is headed our way so I have to double check and triple check I have all my meds and everything else..... I mean no telling what will happen.... flooding, no power.... who knows.....

I see the inside of a hospital more than any other place..... I have close friends but it's hard sometimes because I don't want to come with my damn sob stories about my health for the 194823838 time....and social life? What social life?

My husband is understanding, supportive, loving....but my goodness I feel like such a burden.....

I talk to Drs and Nurses all the time..... I have their numbers saved in my damn phone..... like....everyone knows who I am.....

I'm sorry or maybe I'm not sorry. I'm so tired of apologising when I didn't ask for any of this shit to happen to me. I dont want to be here with this damn condition...but I am. I will get to my acceptance of this....I always do....

But some days.... like today...I'm just so tired and I just need to scream into the void.....I'm at my limit.... I fucking hate this disease.

"Why are you still wearing a mask? COVID is over!"

"Masks don't even work."

"For healthy people there's no need to wear a mask...."

I really try my best when I go out to mind my business and to focus on whatever I need so I can get back home..... but I have to admit that at times.... things start to grate on me and I start to get a bit self conscious and anxious about continuing to wear a mask.

I have Lupus Nephritis/SLE and recently after my 2nd biopsy my doctors were concerned about how low my white blood cell count was....but in general, I've been told, "Avoid crowds and mask up if you are going to be in a crowded area."

Sometimes I notice people staring at me.... I ignore it mostly.....some of them are nasty looks...or double takes...but then I get people making comments along with these stares....

When I went to a meeting....I had an older person blurt out to me, "There's no need to wear a mask anymore! Those don't even work!" I was frozen put on the spot and just didn't say anything.... thankfully my husband spoke up for me....

It's like I don't want to walk around feeling paranoid or like constantly insecure or like I need to walk around with a flashing light that says, "I have Lupus and I am immunocompromised....F*** OFF" but at the same time I just don't understand why people act so mean about me (or anyone really...) just trying to mind my damn business and get groceries or try to get out and enjoy some time out and about - all while having on a mask! Why do you care about what I'm wearing!?!?!

I just want to be left alone and try to not let this condition consume my entire life and do normal things and then I feel like I have to also deal with this too.....it's just so frustrating....🤬

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.

Seriously... I looked through all of my old blood results and my most recent, I'm like horribly anemic. My red blood cells are all different shapes and colors, and way smaller than normal. I also don't have enough hemoglobin...

Yet this was never something my rheumatologist brought up even once?? The only thing he points out is my neutrophils being very low. Same with my hematologist. Fatigue has been worse than it's ever been and I'm sure that's contributing, I literally explain the severity of my fatigue every visit.

I told my PCP and she said maybe because lupus can affect so much and it's not a priority or they think lupus is the reason why. Regardless I'm taking iron gummies now. They see that and don't check my vitamin leves to make sure I'm not deficient? Seriously 😒.

I’m a 30yo Black Male 6’6 Diagnosed at 12 and life is literally on hard mode.

To start off, I have always been in pain, even as a kid, and fatigued more than normal people. My childhood overall was normal, but at the age of about 10, things started to get worse. So many doctor appointments, tests, specialists, meds, and then being told at 12 that I have lupus. And then at 25, I have fibromyalgia and all the pneumonia, bronchitis, angina, and so much more.

I’ve fought through life with the pain, telling people I’m alright when I’m not. When people ask me why it looks like I got punched in the eyes because of the dark circles I get when I flare, I get frustrated. Being black, tall, and rather athletic earlier in my life, people and even doctors look at me and say, “You look healthy, but I’m in horrendous pain.”

Doctors have to be the most frustrating part in all of this because as a kid, they started giving pain meds to me: opioids, sleep aids, and again, so much more. I was on and off multiple things like the fentanyl patch, button patch, and of course, the normal sets of opioids. Luckily, at the age of 28, I fully got off all opioids, but now my pain is at a point where I can’t manage my life. I work from home, but even then, it’s hard to work, focus, or even sit in my chair(specifically got one for back support and long sessions of sitting). My current rheumatologist literally just told me she couldn’t help me because I take Klonopin for anxiety.

My own girlfriend doesn’t truly understand that sometimes I’m in so much pain that I want to sleep sometimes and/ or if I try to fight through it, I’m grumpy because I’m uncomfortable. She’s getting better, but she still says the occasional “You’re faking,” and it’s so frustrating on the inside. I get it. I’m tall and look like nothing’s wrong, but it is.

Sorry for the rant. I’m just trying to get stuff off my chest. Are there other males that have similar issues?

1. The heels and soles of my feet hurt so bad it feels like someone took a sledgehammer and smashed the joints within them. And then set them on fire.

2. My right knee is not a joint. It’s a concrete beam between my thigh and my shin. It doesn’t bend.

3. My left ankle has decided it also doesn’t bend either.

4. Burning sensations in my thumbs. It feels like someone has a lighter to them and won’t piss off.

On the up side, my upper body has taken a break today from yesterdays torture where my right elbow, left shoulder and hips wouldn’t move.

Anyone else wanna share their symptoms?

I'm in my early 70s and was diagnosed when I was 35. I live in Florida, and I love it here for 7 months of the year, but summer is brutal. Heat is one of the major enemies of lupus sufferers.

My aggravation is that people don't, or refuse to, understand just how badly the insane heat of summer affects me. I'm literally a prisoner in my home, only go out if I can get back before 10 am. Otherwise, I can go outside just to get some fresh air for at most 5 minutes in the shade, and even at that, I come back in sweating. I sweat very badly now, never did when I was young, lived outside in the heat of summer, but lupus has changed all that.

My friends don't seem to get it. They say "We can go to somewhere that's air conditioned," but I have to remind them that after we leave, I have to get into my 120F degree car and drive in that heat until the a/c finally kicks in. It takes a very long time for my little Chevy Sonic to cool down a car that hot.

Also, I cannot stand very long or walk for long distances without extreme back and shoulder pain. I love hiking, I really do,but I cannot do it anymore, even in the fall and winter when it's cooler.

My sons used to be this way, but they have finally accepted that I can't do the things they want me to do. One of them seems to think that if I just work out at the gym every day I will be fine. I can't wait until they get old and start feeling guilty about how they treated me. Honestly, they are very good to me otherwise, but I think all this health stuff is so they won't have to take care of me when I can no longer live alone.

Just wondering if anyone else has these aggravations. Lupus is a dream killer. I had so many dreams when I moved to this place 10 years ago, but I never could do any of them.

I just need to vent. My husband is a bit all over the place sometimes with how he views my illness. But because I was in quite a flare this week, the dishes did not really get done. He said “I know we’ve both been having a rough week and we can get lazy at times but we need to be better about it.” And I said “I was in a flare up.” He then said “your flare ups don’t last as long as you say they do.” Then I got mad and said “okay then I’m just a liar hiding behind a fictitious illness and making excuses.” It basically ended with him saying I can’t continue to use my flares as an excuse once we have kids. It really hurt. A dish is different than a living being. I’m so tired of people seeing me as lazy because of this. I so wish that they knew what this was like.

I (27F) decided last year that since I was doing so well and was only on plaquenil because my lupus was inactive, that maybe it was the best time to try for a baby. My beautiful baby boy was born in January and my pregnancy went so smoothly, even the whole birthing process! I did get sepsis shortly after giving birth, but a round of antibiotics helped and I was all good to go. Now, here I am, 2.5mo postpartum and my lupus is back with a vengeance.

I was first diagnosed at 15 when I showed signs of JRA, juvenile rheumatoid arthritis, so they put me on plaquenil and a steroid. When that didn’t work, they gave me 2 infusions of rituximab, and I stayed pretty healthy for a couple years until I turned 21, when I once again needed another round of infusions.

A few days ago I saw my OB and he gave me an antibiotic because I seem to have gotten another UTI. Well, I took the medication at night right before going to bed, and I woke up to a fever and chills. I was literally shaking so bad that I couldn’t speak. I kept throwing up and my face got all puffy. Husband took me to the ER because he was so worried.

We got there and I coded for sepsis again. I was also diagnosed with cystitis.

I was only there for like 5 hours before they let me go home and I still had a fever.

They gave me another antibiotic, which I’m terrified to take and told me to continue taking the previous antibiotic as well… you know, the one that caused all of this! The next day I did just that, and boom, fever 103, again! I decided to not take the second dose and my fever went away.

Now I’m left with horrible swelling in all of my joints. I can’t even make my own baby his bottle. I’m so lucky to have my mom here for the week to help me out with him and I feel so guilty because I can’t even care for my own baby.

I don’t know what to do. I’m so scared. My body hurts so bad. I can’t even brush my teeth or wash my hands properly because it hurts so bad.

This text is from a friend I’ve known for a decade. Anyone else get bs like this from friends/family? And why aren’t you more like Selena Gomez?🫠🫠

I despise the word "flare", because it implies that there are times when we're NOT afflicted with this disease. That is not the case. Even if we're feeling better than usual, this disease is always affecting us.

I feel like the concept of having "flares" minimizes the effects of this disease.

Thoughts?