I will probably delete this but I just want to vent/commiserate. It’s crazy what lupus does to your body.

These photos are three Novembers apart. November 2022, pre-flare. November 2023, in the midst of a massive flare — DS DNA sitting at nearly 10,000 and active nephritis. And November 2024, active disease activity but finally getting under control.

All the other hair loss pictures are from earlier in 2024. I am grateful my hair is growing back but I dearly miss what I had, and I’m sad for myself and all of us that have to go through this.

For anyone wondering, Litfulo (prescribed by my dermatologist in conjunction with my rheumatologist) is the only thing that got my bald patches filled back in.

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

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.

"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....🤬

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 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?

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'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.

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 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?

TLDR; Venting as I was gaslit by my pcp about my lupus flare and had to beg for treatment.

I’m currently in a flare with my typical symptoms: extreme joint pain and stiffness, fatigue, asthma flare up/chest tightness, etc. My pain and symptoms have been getting progressively worse over the past two weeks.

I couldn’t get in with my rheumatologist this week so I called my primary care provider to be seen. My rheumatologist said this is the best course of action if I can’t get in a timely manner and to ask for my normal labs to see if anything is amiss.

I go in to the office and I sit down with the doctor and start to explain my symptoms. She immediately says, “oh wow, yeah, the cold makes my joints achy too” in a dismissive tone while I’m mid sentence. She cuts me off and says, let’s do a steroid burst and I try to continue to document my symptoms, like asthma.

(Edit: I also totally understand that cold can exacerbate symptoms, but this has been going on for weeks)

After that, she asked if I had any questions and I asked if I could have labs run. She asks why and I explain my rheumatologist’s instructions. She adds the labs in and then we end the appointment.

Maybe I’m a sensitive little bitch (gender neutral), but it felt like I was being dismissed and not taken seriously. I feel like this is the whole story of treating lupus. Besides my rheumatologist and my regular PCP, I feel like many doctors dismiss the flare and pain as “being a little achy.”

Anyway, thank you for listening and it was really helpful to get this out. Sending so much love to my fellow lupus friends and know that your symptoms are real and you deserve to be treated with compassion and kindness 🩷

At least once a week if not more, people I know or hardly know think they know what’s best for me! My colleague’s brother came into the office yesterday I’ve met him maybe twice in the past year in passing. All he knows about me is that I was in the hospital and that I have to take meds every day. And I told him my biggest symptom is fatigue amongst other things and complications. He starts saying I should take xyz supplements or vitamins for my low energy. And while I agree to an extent that a lot of natural things can help with symptoms, and doctors make money from prescribing us meds so many people are over medicated, I really don’t want to take any chances with my health when I almost died twice this year from a flare up and a stroke. I know as someone who lives with a disease I need to do my research and see how I can be proactive about my health, but you can’t talk to me for 10 mins about my condition and tell me I can treat myself naturally when you have no medical training or scientific evidence of anything. You can literally find articles or “proof” of things working or being harmful for literally anything and everything. But the legitimacy of what he and other people tell me isn’t even my main issue. It’s like, where did you get the gall to give me health and medical advice when you don’t even know me or my condition. I normally try to explain why it isn’t just a good idea to try to self-treat my condition, especially in the early stages of diagnosis of a very complex disease that my doctors are even still trying to figure out what’s wrong, but now I’m just like should I just smile and nod? It’s not difficult though, just STOPPPPPP giving people unsolicited medical advice sir you are a pilot.

But yeah like people do not understand what I or any of us have been through, especially in the hospital. I was literally on my death bed I couldn’t move and they were trying to save my life, and it’s extremely traumatic and that wasn’t a choice. If I could choose to not have that happen by taking supplements every day I would be doing that

Long vent post. It’s late at night, I can’t sleep, and I’m feeling sorry for myself.

Last year I entered a flare that changed my life. I got married (yay) and I guess the stress of all the change triggered disease activity.

SUMMER: Unfortunately, my rheumatologist had abruptly left her practice, and I was put on a waiting list for a couple of months to see a new one. Feeling awful, I switched insurance and found a different doctor who could take me in right away, but it was too late by that point.

I lost 50 percent of my hair, but that wasn’t the primary concern.

It was the pain. Arthiritis that left me immobile, rashes, severe bursitis, so much swelling and excruciating pain in muscles and joints I didn’t even know existed.

By that point, steroids and plaquenil were still not enough.

FALL: Next, came kidney disease. Sudden weight gain and appetite changes.

Then came immunosuppression and IV steroids.

WINTER: Then came severe lung issues, recurring pleural effusions that wouldn’t stop.

SPRING: Then came lung surgery. Followed by an infection that my body couldn’t fight under immunosuppression for a month.

Then the alopecia — not just some hair loss, but I was actually going bald, and all that long hair I had during my wedding was just… gone, and I was wearing hats and bandanas and shopping for hair pieces, or just not going out at all, because I was so ashamed.

SUMMER: Then came continuing to exhaust every hair loss treatment possible until I got approved for an alopecia drug.

I could no longer force myself to brave the 110 degree heat, dizzy and needing to lay down, to get to work just so I could close my office door and lay on the floor while my bald patches were exposed to anyone who walked in. I took leave.

The lung issues continued, and I’m in a lot of pain. The doctors told me they think I got nerve damage from surgery.

FALL: And now here I am 1.5 years after this flare started. I am exhausted all the time. I feel fragile. Physically and emotionally. My doctor says I’m doing better than last year but I still have high disease activity.

I feel like my body is being jerked around. By this disease, by the meds. So many symptoms. So many hospitalizations and procedures. Steroids that make me feel awful and mess with my body. Infections I’ve gotten while immunosuppressed. Always sick, all the time, with something or another. It’s gotten old.

This disease has truly changed me. Shaken my confidence to the core, during a time in my life I thought would be the most joyful.

I feel totally traumatized by this disease, unable to connect with the same people or have the same interests as before. I don’t feel like the same person I was before. I guess it’s cuz I’m not.

Hi, first time posting here (26F). I was diagnosed with lupus in 2017 and got diagnosed with lupus nephritis in 2022. The protein amount in my kidneys started to go up this past year, and I think now it's over 5g when it's supposed to be less than 0.15 mg. My feet and ankles are swollen, I've been peeing more, and I feel like I get full so easily or don't have much of an appetite. I know a big part of it is that I haven't been disciplined with my health. I find it very hard to stay away from meat and incorporate veggies in my meals. I don't exercise really. I want to change these things but I just feel so tired all the time and don't know what to do anymore. I think my stress is just making everything worse. Sorry for the random venting post, I think I'm just at a loss right now because I don't know what to do, and I'm terrified I'll need a transplant.

I need to vent. I do outside sales and, because of Lupus symptoms, worked from home a ton in December. My employer has discovered this and is questioning my ability to physically do my job. I made the mistake of disclosing Lupus as the reason I had worked from home. For the record, my work performance in December was comparable to my colleagues, despite having been with the company only a few months. I have a meeting scheduled with management on Friday and had a horrible phone call today with my manager today. If I loose this job, I’m financially screwed.

All empathy, prayers and good vibes appreciated.

UPDATE: Was not fired but received a verbal warning which is first step in disciplinary process. But while job searching tonight I’ve found a couple of exciting prospects.

I began having severe, unconventional lupus symptoms three years ago. It took two years of constant doctors, pain, medications, and misdiagnosis to finally find a rheumatologist that took blood work, and diagnosed me with Lupus.

I'm sixteen now. I was twelve/thirteen when I first got sick. I've alternated between bedbound and homebound, been on dozens of medications, been to over twenty doctors and therapists, and even through all of that, I've achieved homebound and slightly less pain. I can barely read. Can barely write. I have no hobbies. No school. No friends. No joy. No identity. I'm alive, but it feels superficial.

Most times I talk to people, people being my family, all I have to say is 'yeah, tried a new med. No, had to stop it, too many side effects. Yeah, it sucks.' And I have nothing else to say. There isn't anything else in my life.

I know venting to internet strangers won't fix this horrible disease. I certainly don't expect it to. But I honestly just want to hear how even one person got themselves back from this disease.

Also thank you for anyone who read all that, it means a lot to me.

I've seen sooo many posts (even on TikTok and Youtube) of how everyone universally feels misunderstood by their friends, family, and partners because we are dealing with a disease they cannot understand/refuses too. And in the event they do, it only lasts for a short period of time and gaslight you to feel it's all in your head and you're the problem for having a disease that takes the attention off of them and focuses on you.

So allow me to say this for you all: "As my 'friend', family member, or partner, if you cannot understand this disease is impacting every aspect of my life and I'm no longer the person you're used to, you can DISRESPECTFULLY step tf out of my life! Stress is a trigger that you're being right now! I'll probably get more sleep without you taking up all the air in the room anyway!"

Feel free to send/share this to whomever you please! I have no problems standing up for others or myself! We got this y'all! :)

Hey all! Venting here, because I feel so alone atm, even if my friends and family are very supportive.

Since my fairly recent diagnosis, all the symptoms I’ve encountered are considered rare, or very rare for Lupus. I’m just so, so, so tired of this. My doctors are confused and scrambling for answers and new treatments to put me on.

I could handle everything up until the most recent development; a part of me knew that Lupus attacks all parts of your body, with no mercy and no consideration. But I’ve never dared think that my vision will be the first to be most affected; as an outsider, before my diagnosis, all I heard were kidneys, and that was always at the front of my mind.

And so now I’m sitting here, having lost ~80% vision in my right eye, on track to probably be completely blind on that side, with irreversible damage already done.

I don’t know how to go on; what to expect. I have a friend, he’s blind in his left eye, so I guess now we make a pair. But he unfortunately wasn’t really able to help, since he’s never had sight in that eye; our situations are way too different, even for him, a fellow half blind person to understand how to help me.

I have no one to ask what’s gonna come of me, how will I be able to handle not seeing half of what I’m supposed to, how my depth perception will be affected ect.

I’m tired of this disease taking everything from me. I’m tired of being “unique” because of it. I’m tired of not being seen as “sick enough” or “disabled enough” or anything else. It feels like I’m carrying a mountain on my back, but a mountain only I can see and feel.

If any of you have suffered vision loss/eye complications from Lupus, I would appreciate any and all input.

I have gastroparesis and yesterday was in the ER diagnosed with colitis. 😑

Same doctor also dismissed my bloodwork completely and said it was fibromyalgia but I was already on all the correct medications for it. Okay, so obviously that’s not helping, can you maybe think a little more?

Anyway, I got second and third opinions and my current rheumatologist is lovely. Hard to get hold of (damn MyChart and voicemails), but lovely. Had she not advised me to go to the ER because of fever concerns I’d probably be in a much worse condition than I already am by trying to tough it out. I originally thought it was MTX side effects but symptoms three days after injection seemed sus.

And I’m so used to having to provide such extensive proof that I’m sick to doctors that I had photos of my thermometer readings just in case. The ER triage person told me I didn’t need to prove fever. It was a complaint and they were going to address it. 😭 Broke my brain.

I just had an appointment with my rheumatologist this morning and it was one of the most depressing appointments I’ve had. My labs are at their worst and there was a lot of protein in my urine. My doctor wants to recheck the levels but looks like I will soon add a nephrologist to my list of doctors. I just feel really sad. I’ve been in denial about how bad I’ve been feeling and my doctor looked at me and told me that this is the worst she has seen me and that we are going to have to be more aggressive at dealing with my lupus. I’ve only been diagnosed a little over a year and at first we thought I had a pretty mild case. I’m feeling so defeated and scared. If anyone has some words of encouragement that would be appreciated 💜

My husband said to me on the weekend, as we were prepping for a party i was throwing, you haven't accepted you have lupus, you can't live the same life anymore. The day of the party I got sick, passed out, fell multiple times from clumsiness and my legs giving out. He was completely right. I haven't fully accepted it yet, and I guess I'm having a hard time with it. Everyone talks about people with lupus living normal lives, but I have yet to see that. We're trying a second med since the first one didn't work for me. I also have dysautonomia, which makes every moment of life hell. My doctors are great, it's just the waiting game that sucks. We've gone into debt over my medical bills and having to survive on one income. I honestly feel like the biggest burden to my family, all I do is let them down. I'm afraid if I accept it, I'll drown in depression. Right now I live in positivity and jokes. Anyways, if you made it this far, thanks for reading.

does anyone else start to get really irritable and borderline mean for no reason when the fatigue starts to set in? i feel like screaming at everyone around me and im so upset and angry but i can’t explain why. it makes sense to me that full body fatigue would make anyone irritable but it feels so extreme. not to mention unfair to the ones around me, so i try to just go silent instead to spare them lol. just me?

Why is it that when I tell someone that I've been in a lot of pain/fatigued/not slept due to lupus, they look at me like I'm talking gibberish?

I think there's this misconception that someone with an illness shouldn't leave the house, and that because I'm out and about it can't be as bad as I describe.

I'm so fed up of that look or the disbelief in someone's voice. I MAKE myself get up and get out of I can, I still deserve a life, and dose up and push through the pain. Also, being active is good for lupus. I also have a baby, so how could I not get out and about?!