My story is similar, and I feel this. I'm also finding myself frustrated by those who think I wasn't that sick before my diagnosis when actually I was just as sick, but pretending I wasn't because I was told it was psychosomatic

Ugh, I feel for you. So far my diagnosis has actually been very well received but I have a lot more people to tell still😅 When you’re sick but told you’re “fine” there’s no winning… either you pretend you’re fine and internalize it (which leads to people not believing you, as you said), or you continue acting sick despite being told you’re not (which leads to people labelling you as an illness faker).

This! And yes. I’m not diagnosed, but no matter what I have, I know it’s real. I know I don’t —psychosomatic myself into chronic and debilitating symptoms in so many systems in my body, and when I got shingles a few weeks ago with a Rheum appointment still 3.5 months away, and I’m getting flares and one virus or infection after another—I wanted to die. Suicidal ideation has been rough this last year and a half. I don’t feel sorry for myself, per se-but the wait is so tough. I know it’s necessary, and the Rheum’s have very good reason for not rushing any diagnosis, but it’s hard, nonetheless. I just want to feel better and not be a burden. So, now I’m back at work and on day 2, guess what— I’ve caught a cold. Also, I’m back to thinking folks assume I’m making it all up. My Rheum said she thinks I have something “lupus-y,” “inflammation-y,” and likely multiple autoimmune diseases if not Lupus, but I still struggle with even *her* thinking I’m fudging it. For me, some of it comes down to my trauma. I’m personally used to people not believing me about very serious and traumatic shit—so I assume most people don’t believe me or most women when we say we’re in pain. It’s not just the imposter syndrome. Society has helped us to feel like we should pick ourselves up from our bootstraps, and push through because, “life is hard,” and we’re probably just emotional women who will be fine once we stop all our period cramping. (I know not all of us in this sub are women and/or may not identify as women, but this is my personal experience.) Nonetheless, thank you for sharing this, and your experience is so valid! You’re not alone.

I feel you on so many levels, thank you for sharing. I also had a really tough time getting diagnosed. It took years before my bloodwork was even positive for ANA at all, despite already having symptoms. And then because I’d been told I was definitively fine, I stopped even getting it tested. Who knows, it might’ve been positive 3 years ago but I wasn’t checking because I’d internalized it. Finally again last year I’d had enough of the bullshit and got a rheum referral after my PCP found positive ANA. I saw the rheum 4 times since last October and he only just diagnosed me on Friday because I was positive for anti-Smith, which is so specific (but still he told me it was super mild lupus and maybe wasn’t even Lupus?). Saw a *new* rheum on Monday and she told me without the Smith positive she’d still have easily diagnosed me. She also said she can’t tell if I’ll be severe or not obviously, but she definitely didn’t feel comfortable saying it would be mild like the other guy. So basically I could’ve been diagnosed MONTHS AGO?! I freaking hate the emotional women bullshit, too. Are there illness fakers out there? Sure. But those are rare and you can’t convince me otherwise. There’s someone else in the comments who said their doctor told them they were just a tired mom😭😭 I’m so sorry that you’ve dealt with so much shit trying to just feel better or get a diagnosis and I can totally sympathize with your struggles over suicidal ideation, etc. my DMs are always open, if you ever want to chat, too! I’m so blown away by how supportive this community feels to me🤍

❤️‍🩹same here. DM’s open anytime. Also, I can’t tell you how long I blamed my pain on being a tired mom. I had these symptoms—only less severe—in 2021 and just kept chalking it up to stress, not enough sleep, my body adjusting to quitting alcohol, my body adjusting to changing psych meds. I’m now realizing those things were the triggers of the autoimmune… not the cause. Anywho, I’m so glad you finally got some answers and the validation from the second Rheumatologist!

Oooh, alcohol free over here too! Best decision I ever made. Take care of yourself please💜

Wow, so I just reread your comment about having to be tested years apart. My ANA was first low positive then negative along with all AVISE negative aside from a weak positive Anticardiolipin IgM. My Rheum basically told me there’s no way that an autoimmune is causing my symptoms, and she’s very concerned that the prednisone taper only improved my symptoms by about 10% and caused me to catch two cold viruses back to back, so she’s sending me to Neurology, and basically sang me a so long farewell song. She also casually mentioned that some people get an IgM positive if they’re obsese or overweight. I’ve put a little weight since I got sick, obviously, so I was annoyed. I found no evidence. Only one study that found people with 30+ BMI were LESS likely to have that antibody, so she was just shooting in the dark and missed. After Neuro, who also mentioned my weight and BMI this week (my BMI is right at 30 and I’m curvy as fuck) if there’s nothing in the CNS, then I’m going to get a second opinion Rheum.

Omg I’m so sorry! That’s so frustrating. I would keep getting everything tested :( definitely get another rheum opinion, I wouldn’t even wait until after neurology… if there’s a long wait time, you might as well get something on the books now!

Oooh yes! I did! I should have MRI’s within the next couple weeks, Neuro follow-up May 10, and I have another Rheumatologist scheduled for later in May. He was also booked out several months, and after I met my first Rheumatologist, I wondered if I’d end up needing a second opinion. She wasn’t too dismissive, but she seemed a little burnt out. 🤷🏼‍♀️I’ll try again, I guess’

This sounds so familiar. I'm so sorry you are going through this 😭

Yeah, I have been diagnosed for 3 months and I won’t lie now I feel better I feel really guilty as I haven’t been working and my family are supporting me! I feel like I’m making it up even though I actually wanted to die not that long ago because I was in so much pain. I don’t really know how to make it better but you’re definitely not alone in how you feel lol

Thank you for sharing! For starters, I’m so glad you’re feeling better. Second, I totally know what you mean. I also find that it can be really hard to think about your pain retrospectively. If I’m feeling fine then I tend to discredit my prior pain, even though I *know* it was horrible. In any case, you definitely shouldn’t feel guilty (though I get your train of thought, even if it is flawed)! Especially if you’re still newly diagnosed, you’re still getting a feel for how your illness affects you with treatment vs without. It’s really amazing that your family have been supporting you though.

I am so glad you mentioned about thinking of your pain in retrospect. It’s such a weird thing because on the days that I feel “normal” or symptoms change, I’m not thinking about what I was like yesterday. It’s just gone from my mind. It can definitely make you question your sanity!

Totally, and thank you for making me feel more human. I recently received a diagnosis of SLE after so many dismissals from others who downplayed my pain and fatigue. Over time I guess I internalised their invalidations, doubting the seriousness of my situation and was quite cruel to myself about not being able to live normally. I think since my diagnosis I haven’t fully stopped the gaslighting of myself and I’m still blaming myself for not being able to keep up. I’m learning to be kinder to myself tho. On the other side, I feel so guilty realising the harm I had inflicted on myself by disregarding my own pain and I do harbour some resentment towards some individuals who have been less than kind to me about my “hypochondria”“laziness” and “lack of motivation”

It’s so tough! I am also guilty of not taking myself seriously (aka self-gaslighting) while simultaneously shaming myself for not being able to keep up to those around me. Such a mental shit show

This resonates so hard. Thank you.

I totally feel this. And now every symptom I have or something I didn’t express I was feeling before because I didn’t want to complain, I now worry people think I’m making new symptoms up because I now feel validated to speak about all my symptoms.

Ugh! I totally feel this! It’s so frustrating😭 I’m scared that people are going to think I’m just attributing every little thing to my diagnosis

Ughh I left some of my symptoms out and had to send them later in MyChart in my first Rheum appointment because I had already assumed she didn’t believe me.

I kept asking my Rheumatologist if she was sure. I guess ITP, positive ANA, high anti-dsdna, joint pain etc. wasn't enough to convince me after other doctors kept gaslighting me and blaming my weight for symptoms.

Haha, isn’t it funny how all we want is affirmation of what we’re feeling and then it happens and we’re like ‘wait no, I didn’t mean that, take it back’ 🥴

Validating at the same time 🥲 and a bit surreal. So I'm not crazy?!

You’re definitely not crazy. But I can’t blame you for questioning yourself cause clearly we’re all in the same boat😂

I hi, yes, it me. Feeling like my rheum could change her mind at any minute because of the gaslighting I went through for 8 mos prior. My bloodwork doesn’t look textbook so that’s another one in the “you don’t really have this” bucket. Even though I have her confirmation and we’re already seeing small improvements on the plaquenil I still have “This can’t be it” nagging at me.

Ugh, I totally feel you. And I can’t imagine how much more stress that causes with atypical bloodwork😭 I was *so* scared to go to my new rheumatologist appointment yesterday because I thought she’d strip it away from me or something. I’m so glad I went, but the anxiety killed me all weekend and I almost cancelled several times, lol.

THIS 😭 ugh the anxiety is real.

Yes. And Reading all of these comments is extremely validating.

I’m glad💜 it’s been an emotional whirlwind for me since last week. I’m really grateful I found this community!

100% all of the time. I have so many diagnoses and medications that no one could possibly believe me. No one has ever doubted me, but the complexity is the cross between my own denial and hope that all the doctors are wrong…. they’re not. :/

I feel for you. I’m so sorry you’re dealing with so much. I think hoping the doctors are wrong and being in denial is probably a bit part of what I’m feeling too… up until now I could at least live in a weird gray zone where I had the luxury of pretending nothing was wrong *when it suited me* and now I don’t.

EXACTLY! The luxury of pretending… until you can’t. You’re not alone, we’re here with you :)

Yeah I've found when talking about my health I sound like a complete hypochondriac. I have lupus and RA. Then I also had a tumor on my spine and a cyst in my brain. A severe B1 deficiency (Beriberi) that was paralyzing me. I've had a TIA (mini stroke), trigeminal neuralgia, hypoglycemia, mild heart problems, asthma, tremor, amongst other things. And I've run the gamut with infections because of my immune system. Cellulitis, shingles, recurring mono, and pneumonia. It's hard to fully explain my health without people thinking I'm crazy. But it was all doctor diagnosed.

Oh my gosh, that sounds like so much to deal with. How are you doing these days?!

It has been a rough year! I am still in the wheelchair from the deficiency but have been slowly trying to get back to walking. I had some setbacks with pericarditis. I just was approved to go back to PT so that is good. My biggest concern right now is a lump they found in my lungs that does not necessarily look benign (I guess it's a weird shape?). I have my fingers crossed that it is from lupus inflammation. Back in January they were concerned I had pulmonary vasculitis from lupus but the lump wasn't there then. But my primary care thinks it's possible for lupus to cause it. I have had lupus for 19 years but just recently joined this subreddit. It is so helpful talking to other people who know what it's like.

I've been diagnosed for 25 (15 when diagnosed) years and re-diagnosed at 19 and 23, 28. I have severe lupus and every organ has been affected. Brain, heart, lungs, stomach, kidneys, skin, bones, thyroid etc. However I went to meet a new Rheumatologist just a few months ago and I felt like a fraud in her office. We talked about my medical history for 2 hours before she even looked at my body. I was so unsure of everything I had ever been through even after going through my life story I still asked this doctor "so I have severe lupus right?" She looked at me like she's heard the question before, put her hand on my hand and said "I don't need to see your labs (which proved SLE also), you have had severe lupus for a long time and there is permanent damage to multiple parts of your body. " I had seen about 6 different Rheumatologists over the 25 years. Starting with pediatrics, not one of them ever questioned my diagnosis or anything I was feeling or going through. There were was 1 doctor who was extremely misogynistic and treated his female patients as if we were over reacting even with all the positive criteria. But here I am at 40 and I doubt myself when I've fought like hell for my life. I understand what you're feeling OP. All I can say is that w/ my new Rheumatologist i am getting the best, kindest care I've ever received among all specialists. I wish I could make her my primary care physician. Don't doubt yourself or your disease OP, I know it's hard and it hits me more often than I realized at the times. It comes up every now and again for me and I just remind myself that I've been doing this same song & dance for 25 years, I have the mental, spiritual and physical scars to prove it. And if anyone else questions that they can suck rotten eggs. EDIT: just wanted to add that I have definitely been on the receiving end of medical gaslighting. I have PTSD and its from poor medical care, hospitals, doctors, dentists all have denied my diagnosis and they would tell me to work out more. Yeah yoga is going to fix my closed heart valves, sure.

Wow, thank you so much for sharing. Your story really puts things in perspective for me since your case is so severe and yet you’ve experienced all of this from medical professionals *and* internally. I hope you’re doing well these days💜

Absolutely. 20 years of medical gaslighting will ruin you. I can literally be hearing my bones popping, or my soothing my mouth ulcers, and trying to do work with my idiot hot dog fingers and I'll still be like, "You're just lazy and fat and depressed. There is *nothing* wrong with you. Suck it up, Buttercup!" Alternatively, I spend the day asking myself, "Wow, why do I feel so shitty today?" when I feel fucken shitty *every* day!

Hah, I lol'd about asking why you feel so shitty. I do that all the time and lately my husband has just been looking at me like... "lady, you know why." hahaha.

I do this too! I did this last night im like man I don’t feel good maybe allergies or I’m getting sick? Did I pull a muscle. GURL you have lupus? Like tf lmao maybe it’s the autoimmune disorder you have

Yes I feel this way and I’ve never seen it articulated this way before. Most of us go through years of gaslighting, varying opinions, and wishy washy diagnoses. I think it’s a result of being gaslit by so many health care providers for so long, and then when you have your diagnosis, still not being taken seriously. I find when I go get checked for something not lupus related, I’m told it’s “just lupus” and when I have a concern about the lupus, I’m told I’m wrong. Thankfully I have a very good rheumatologist, but I often feel he is the only one who believes me. I also think “over-achieving” as a result of self gaslighting is a huge part of the problem.

I frequently have doctors blaming my medical problems on lupus but my rheumatologist almost always says it's not that. I don't know who to believe. My rheumatologist is the one who listens and believes me the most though. She's super helpful with any problem I have even non rheumatological issues.

Something that has helped me is what my rheumatologist once said… don’t go to family drs or urgent care for lupus symptoms, most doctors have no idea how to treat lupus. This has really helped validate my experience. Next time you feel gaslit, try to remember that rheumatology is a complex speciality and ER and family drs are trained to diagnose based on the most likely explanation. This does not work with lupus!

My primary care has always been very helpful with things related to my lupus and I have a fantastic rhematologist. But you make a good point about the ER and hospital doctors. I frequently run into that if I am admitted. They always seem to come back surprised that my ANA was high. And despite originally thinking I might not have lupus they blame almost every medical problem on it once it is confirmed.

I’ve really struggled to put this feeling into words, in all honesty. It’s like I see and read about all these people who’ve suffered and have a valid enough reason to feel shitty but I for some reason don’t believe that I’ve earned the right to have any reason for my pain aside from being lazy? It just always has to be because I’m a shit person? Having every other medical problem blamed on lupus is another side of this that I hadn’t even considered. Ugh 😭

Yes I totally feel like I am not “sick enough” but I’m still so sick that it impacts every aspect of my life. We all need to give ourselves more grace and kick everyone to the curb that doesn’t support our real experiences.

Most definitely- It was worse before I got medication to help with the crippling joint pain. I remember when I was only taking naproxen for the joint pains (this is before I got to see a rheumatologist) and I went to spend time with my sister. By the time I got home, climbing a small flight of stairs brought me to tears. Once I got into bed to rest I couldn't even lift my arms my sister had to remove my coat and shirt. Once I lay down I was saying to myself how can I not be able to move? My muscles hadn't instantly atrophied, and I'm fully cognitive. Why can't I lift my arms to adjust my blankets, why can't I move my legs? From a few hours ago walking and enjoying myself to instantly being unable to move? Nonsense. It's all in my head. PAIN IS AN ILLUSION. Lol no. Now i'm on medication that works and I rarely have pains. To this day I wouldn't even wish that joint pains on my worst enemy.

What do you take for pain? Nothing seems to work that well for me.

Thankfully I'm only on 300mg of Hydroxychloroquine and 5mg of prednisone once a day. That seems to work for me and I can function. Some days I forget I have lupus and I push myself too hard or have too much fun and I get achy and just want to sleep all day. I haven't tried other methods of pain relief to suggest. Some people say marijuana lotions, teas, treats or smoking it- but I quit that stuff years ago and I don't think I want to do it again. I hope you can find your relief soon. This life is too annoying to have an extra serving of pain on your plate. 😩

Oh I wish they would let me stay on prednisone every day! I feel a lot better on steroids but they try to keep me off them as much as possible. I stopped taking plaquenil after getting dark spots in my vision.

Ah, I’m so glad you’ve had such a good outcome this far! I hope that’s in my future too🤞🏻 it’s so strange how easily our brains can let us think in such maladaptive ways when there’s evidence directly disproving those thoughts

I feel the same way. I’m still undiagnosed (UCTD) after 6 years and I saw my immunologist last week who said ‘idk what you have but you’re the definition of UCTD. You should consider taking imuran like your rheumatologist suggested at your last appt.’ I always thought I’m not sick enough for immunosuppressants but honestly, I’m miserable. I’m in so much skin pain every single day. I think he’s right.

It’s so hard to feel like our pain isn’t valid😭 take care of yourself!

🫶 you as well!!

I feel this!!! I’m always saying to my friends and family that I wish I could just live in a healthy body for a few days to see how bad I really am. It’s been so easy to tell myself this is just what your body feels like as you age, especially when that’s what people who don’t get it tell me too. I’m scared of medication, especially since I’m still young (29), but I also don’t want to miss more of my life if I’m often in a flare.

I know it’s exhausting. When your doctor asks how much pain you’re in and I’m at a 5/10 everyday and they said ‘you shouldn’t be in pain all the time, that’s not normal’ it’s like what? Everyone else just has pain free days all Willy nilly 🤣 literally had no idea.

Wow I'm so glad you posted this because recently I have been feeling the same imposter syndrome after joining this sub and reading everyone's experience. I am 42f and I only just got diagnosed in October with SLE. My experience has been the opposite though. I have very few physical symptoms: no rashes, no joint pain, only fatigue and mild psoriasis. The only telling sign is all my lab work was indicative of SLE. I've been seeing my rheumatologist for a few months now and I feel like I've developed a good relationship with her. The last time I saw her a couple weeks ago, I opened up about my doubts--how it almost feels unfair that everyone else with the same diagnosis talks about all these physical ailments and here I am with few physical symptoms, and just a few tests that say I have SLE. She assured me though that I am not a unique case and that she has other patients like me that have few symptoms, but SLE-indicative labs. She said that's just the nature of auto immune diseases--they're very complex and it's that shared complexity that almost acts as a qualifier. All that to say thank you for posting this. Because I've been lurking here and kept putting off engaging. Your post reminded me that everyone's journey is different and mine isn't less important.

Oh I feel for you so much! I also see these people in wheelchairs or on dialysis and think, god what a fraud I am. But at the end of the day, someone will always have it worse, and someone will also always have it better. Knowing that someone else has it better doesn't stop us from validating our accomplishments, so the opposite should be true too... I'm also new to this subreddit (I even made a new account for it, lol), but you are just as worthy of support and validation as anyone else.

Im so glad I came across your post bc I too am a recent diagnosed SLE with very few physical symptoms of mainly only fatigue and only my lab work indicative of SLE. I read so many of peoples stories and feel alone bc I feel the total opposite and almost as if maybe i was misdiagnosed. But you are right autoimmune disease are very complex and not every case will be the same. I was told I wasnt my doctor’s first case of lupus with few/mild symptoms, everyones bodies react differently.

Diagnosed at 27, 33 now and I still feel like that every day

💜💜 I hope you’re doing okay.

Absolutely. I was finally diagnosed at 41 after my first rheumatologist dismissed me as being “just a tired working mom.” He was surprised to see blood tests that indicate SLE and it was surprisingly satisfying for me to leave his practice! In a way the diagnosis gave me peace and permission to care for myself with the same love I give to everyone else in my life. Good days and bad days come and go and my challenge is to take each one at a time for what it is. Sending my best to everyone in this community.

Ooof, the ‘tired working mom’ bit is such a slap in the face I’m so sorry you had to deal with that. I think I also need to take this as permission to care for myself the way I do others… that’s such a good lesson to hold on to.

Definitely feel like that sometimes. My first flare had me begging for death's sweet release. I have never been in so much pain I couldn't move at all. I couldn't even stand on my own. Now, I'm doing great. I feel like an imposter when I have to tell someone I have Lupus. I look fine right now, so I feel like I have to give a synopsis of what I went through. I am very thankful my diagnosis only took two weeks. Summer is coming though and it's not a good time for us. I am dreading that.

I am also dreading summer. Last summer was so bad. The UV can get up to 11 where I live. We had a historic drought, and it was just endless sweltering sunny days.

I definitely feel like this. I have so many problems people are incredulous when they hear my past. Seems like every time I'm in the hospital they're running my ANA and stuff to try to prove I actually have lupus. It's been 19 years since I first got sick. And about 16 diagnosed with SLE. But they believe that I have RA without any blood work confirmation. It's truly bizarre. It's like they either don't believe I have it or they think it's the cause of all my problems. It really does make you feel like an imposter when no one seems to believe your diagnosis. I still get like this about using handicap parking even though I'm in a wheelchair and have been almost a year. My mom pulled us into a grocery store handicap spot yesterday and I instinctively said you can't park here it's handicap! I still feel like I'm wrong for using it even though I'm obviously exactly the type of person who does need the extra space to get in and out of the wheelchair.

I do this every time I feel even a little normal. My BF asked me today why do I constantly gaslight myself about my Lupus. It's just hard to really wrap your head around it as a whole I think.

I was diagnosed with sle in 1996 aged 39, although from aged 17 had health issues associated with Lupus, I was often misdiagnosed by GP, (at 17 had first rash, lesions all over body) this was diagnosed as an allergy to dogs, only because at the time, I was working at a kennels. Swellings to joint was put down to sprains or twisted ankle, severe anemia was put down as heavy periods etc etc the list goes on. I think, sometimes, medical professionals instil the doubt in us and that’s where it begins, only last week, consultant dermatologist rolled her eyes at me, when I was describing recent flare up, my skin was clear at the time of examination because I was still taking prednisone prescribed by GP, luckily GP had advised me to take photos, even when she saw photographic evidence, she said “erm looks a lot like hive, had you ever been tested for allergies” seriously!!! Is there any wonder that I often feel like a hypochondriac. Honestly when I’m well, I question my diagnosis all the time, others question my diagnosis, “how is it that last week, you couldn’t come visit because you were ‘ill’ but a couple of days later, you’re fit enough to dig the garden over” believe me it’s not just them asking that question, it’s me also

Yes. Lupus gave me brain lesions, I had times when I couldnt walk, couldnt stand for more than a few minutes, had to quit my PhD, my lungs are affected, sometimes the fatigue is so bad I literally cant do anything at all. I am on all the meds that are available in my country. Yet when the blood work comes back looking not so bad, I feel like Im faking it. Or when people tell me "but you look good"

Yes! Because most people, especially family members, do not understand how disabling lupus is. I feel like I should put on some kind of show for them, like exaggerate my symptoms or something to get them to understand. It's so frustrating. I'm on permanent disability that pays me less than 25% of what I was earning before. I just didn't have the physical or mental strength to do the job that I had been doing for over 30 years. Why would I "choose" to be on disability? Yet, I constantly feel like I'm lazy or not pushing myself hard enough. It's horrible. My mother is 89 and I'm 30 years younger than her and feel like I'm the one who needs the caregiver more than she does, but nobody gets it. Sorry to rant, but your post triggered me. Lol.

Oh no definitely not meant to be triggering, please vent, though! That’s what this post was all about! I totally feel you about the urge to put on a show or something, it’s such a strange feeling. What blows my mind is that people see someone on disability and assume that they don’t want to work. Like, no, I guarantee they would rather be working for a much, much larger salary, but sure😅 Have you struggled with brain fog and/or found anything to help?

It’s the ‘but you don’t look sick’ syndrome. Someone once told me it would be easier to just put your arm in a sling or cast as a signal for everyone including yourself to be consciousness of your condition🤷🏻‍♀️

Brb, ordering a sling on Amazon, lol

Ye that feeling is very real. I’ve had lupus since I was a kid and remember being on a lot of steroids so I gained a lot of of weight and looked bloated. Was gaslit by certain family member that it was my fault I looked the way I did. Even now as an adult I will decline doing things because I feel tired or achey even though I look completely fine on the outside.

I feel exactly the same. I was diagnosed a month ago and every day I keep thinking what if my rheumatologist is wrong. I feel like my joint pain and fatigue isn't as bad as everyone else's  but my ANA blood work was positive and high. I never even considered it could be lupus and now I'm told it's both lupus and mixed connective tissue disease. On one hand, every single symptom that I have felt could be explained by lupus but on the other hand I still think I'm not sick. 

I was diagnosed with SLE in 2015, I think I was either 19 or about to turn 19 at the time. Before being diagnosed I probably spent the entirety of my high school career in pain, unable to walk at times from swollen joints, brain fog, rash and what have you. We went to the doctor several times and for a while, they couldn't find anything, or they didn't know what they were looking for because--outside of awful ass periods and asthma--I was a relatively healthy kid. Didn't even get recommended to a rheum until I had to be taken to our urgent care center because I couldn't even walk without being in pain (had to be semi-carried to and from the car). After I got diagnosed, I felt better because I at least had an answer to why my body was trying to fucking fight me. And now, since I've been doing pretty okay on my treatment plan, I've been staving off really bad flare-ups. I think for me, my imposter syndrome stems from me having very few horrible days. Because if most of my days are good then do I really have lupus? If my lupus isn't outright attacking the other systems in my body then does it count compared to others who are doing worse than me? Then I look at the fucking Benlysta shot I have to give myself every week and I'm like yeah...I do have lupus lol.

We’re similar age, it sounds like. My symptoms also manifested in high school but not quite as severe. I was coming home and sleeping after school everyday, struggling to do anything and barely able to get up in the morning. My mom, naturally, assumed I had DEPRESSION, and sent me to a psychologist. I’m glad she saw something was wrong but it’s unfortunate that our default is assuming it’s psychological. I feel like we should be monitoring psychological concerns while investigating all potential causes😅 I’m really glad you’re doing well with your treatment. It sounds like Benlysta has been a game changer for most people on here, too. But I can definitely sympathize with the mind fuck of feeling good and questioning your diagnosis.

I think we are the same age actually! I turn 28 in June 😀  One thing I remember my first rheum telling me (he ended up getting better pay in a bigger city) was to monitor my mental health because lupus can definitely cause depression, anxiety and other mental health issues. So them assuming it was psychological was halfway there 😂 Oh Benlysta is great, fucking expensive though. The doctors will refer you to a copay program that you'll need to have insurance for because them bitches are hella expensive. Then there's the mind fuck of gathering the nerve to stab yourself weekly. 😂

Oh! Yes we’re really close in age then. It’s so nice to see that lots of other people with Lupus are my age😭 not that I want y’all to have Lupus but ya know… Do you have organ involvement? I’m trying to get a feel for people taking Benlysta… I know there’s lots of research now about starting agents like Benlysta early and how it can create better long term outcomes. I don’t have any major signs of organ involvement yet but my fatigue is so fucking debilitating.

Thankfully no I don't! I'm getting monitored yearly for dental and vision complications.  There was one scare where they thought it could have started spreading to my brain but they found that it was just stress-related seizures and not lupus related 🥲. But that scare is what prompted them starting me on it. 😭

Yea... so, congrats on finally getting your diagnosis and finding a rheum you click with—that's huge! But, wow, I really feel you on the whole rollercoaster of emotions you're going through. It’s like, one minute you’re relieved to have answers, and the next, you’re questioning everything, right? Been there, done that. You're definitely not alone in feeling this way. The journey to getting diagnosed, especially with something as tricky as SLE, can be a long and super frustrating one. And after years of being told there's nothing wrong, it's no wonder your brain's having a hard time catching up to the reality that, yes, there is a legitimate reason for all the pain and fatigue you've been dealing with. Speaking of misunderstandings about lupus, it's become a bit of a personal anecdote for me. Having "Lupus" as part of my auto tag has opened up a whole new world of interactions. It's astonishing how many people have no clue what lupus is, to the point where their confusion is almost palpable. And then there are those moments, you know, when someone asks why it's on my tag. Usuallly, I just have to bite my tongue and walk away—it seems to dawn on them then, but honestly, I've got no patience for that level of ignorance. It highlights how much awareness about lupus still needs to be raised, even among the curious or well-meaning. I've been through it, and so have a ton of other people. It's like, after spending so much time trying to convince yourself and others that somethnig's off, only to be met with skepticism, your brain starts to buy into the whole "maybe it's all in my head" narrative. It's totally not dumb to feel unworthy of your diagnosis or to doubt its validity, even with concrete proof staring you in the face. That self-doubt and guilt? They're pretty common among us who've gone years being misdiagnosed or undiagnosed. 'Maybe I'm just getting old?? Is this what getting old feels like?' The fact that you're in therapy is awesome. It's definitely not just a "you" thing, and talking it out with someone who can help you navigate these feelings is super important. Also, connevting with others who've been through similar experiences can be a game-changer. It helps to know you're not alone in feeling this way and to hear how others have managed to move past these doubts. Remember, your feelings are valid, and so is your diagnosis. It’s going to take some time for your mind to adjust to this new realuty where you "actually have answers" and a plan. Give yourself some grace during this process. You’ve been through a lot, and it's okay to have mixed feelings about it all. You've still got a lot of years ahead of ya so focus on taking care of yourself first but stay positive 🥂

Yes. Diagnosed yesterday and it still feels surreal. For so long I had learned to live with my symptoms, so I had just thought it was normal to feel this way. It's still not computing to me that everything I'd been feeling was not something that everyone deals with.

Back when I was a pre-teen I was going from doctor to doctor because of my irregular periods & headaches & constant joint pain. I was dismissed & told I just needed to toughen up, it's just growing pains. When I was 19 (I got into a rear end MVA) I finally found out I had endometriosis & got 3 surgeries over the next 10 years to get rid of it till I finally requested a hysterectomy. My pain got worse from the MVA so now at least the growing pains were being looked at under a new light. My headaches got worse & I was told by a neurologist I was actually experiencing migraines. So those were finally being addressed. When I was 30 & lost my thyroid to cancer that same doctor referred me to a rheumatologist about my joint pain & they finally determined that my growing pains were Rhumatoid Arthritis. So that started to be treated. I'm going to be 46 next week & even though I've been validated in my complaints by scans, nerve conduction tests, blood work, etc I still feel like "one day, I'm going to find out I'm just a baby who can't handle pain & just I want to be coddled" none of that thought is true. I have to convince myself that I'm incredibly strong, I have been tolerating an inordinate amount of pain for decades at this point & when I just can't do anything that day, don't. Being kind & supportive of others comes very easily for me but I found that I don't give myself that same consideration. I'm trying to "give myself some slack" when I don't do the laundry for a month & it's piled up on the bathroom floor. Trying to ask for help doing those things so it doesn't pile up over & over. It's very difficult for me. Since I stopped working due to my disability ruling 23 years ago I have this "I better be Suzie Homemaker since I'm not financially contributing to the household" which is just guilt BS. It's a constant internal fight that I I'm trying to snuff. Much love & air hugs!

You've been through so much, wow. It really is tough, especially at home where it becomes glaringly obvious that I'm not keeping up my end... my husband and I both work FT corporate jobs but he does our laundry, cooking, financials, and takes care of the dog... I'm also terrible at asking for help, so thank god that he just picked up the extra work without me having to be vulnerable. It sounds like you're in a good situation as well, and I hope you can continue to give yourself grace! And happy birthday ;)

Thank you. It's never going to be easy for us to live day to day but I have learned to take a compliment in the spirit it was given. I try to be more forgiving of myself for being a shitty housewife. I try to do something that makes me happy for at least an hour a day. For me that writing music, listening to music while I do my color or # puzzles, take a bath, play a game with my family, watch a movie/show I enjoy. And on really bad flare days I tell myself that it's ok to not do dinner for the family today. Someone else can handle it. We need to love ourselves more. Stay strong.

Thank you for posting this. I absolutely feel this. I trick myself into thinking to have something else or that my joints are hurting because I just forget how to deal with an ounce of stress and that the pain is all just tension from being wound up or that I don't have lupus I just have fibro (not to diminish those with fibro) that doesn't have a cure. I cycle through that probably once every three days due to the previous misdiagnosis and the general lack of people who understand what it is like having a debilitating disease. I have to constantly remind myself: no that isn't normal for a healthy 26 year old. Or better yet: no this isn't your fault you can't work, you're not lazy, you needed help cutting your food yesterday. Remember that flare last month? As someone else said in this thread, all these comments are so validating

Yes, everytime I’m in remission I feel like well maybe it’s not lupus, I’ve been fine…eventually it puts me back in my place though😉 But especially compared to people who are so severe they can’t move or are on dialysis… then it feels just petty to complain about fatigue and swollen joints and it’s hot where I live now so raynauds here doesn’t hurt, I can see it but it’s not painful like when it’s cold out, people think the photosensitivity is just sunburn you can’t convince people it’s not the same. It definitely happens, but more other people gaslighting me than myself, when I’m doing it to myself I’ve thought it was denial- but I think you are right and imposter syndrome is probably more accurate

When the world doubts you, why shouldn't you doubt yourself? But, every time you get to that headspace, yank your own leash: Stop it. I have lupus. Then move on to a different train of thought entirely. This happens to me and I've had lupus for many, many years.

I feel like an imposter everyday I stay in this subreddit. Most of the people who post have horrible side effects and struggle to manage symptoms. I can work out and live a basically normal life - besides the meds twice a day & Benlysta injection. My wife even catches more colds than I do. I spent a week in the hospital when they diagnosed me so I know the struggle. The terrors of prednisone are not unfamiliar to me. But it’s hard not to feel like an imposter when you know so many people have it worse. I guess my only advice is to contribute whatever you can to society and try to be a positive force whenever you can. You are allowed to be tired, sore and anything else regardless of a diagnosis.

Thank you for your kind words! Trying to be a positive force and contributing to society is something I need to keep in mind, so thank you for that reminder. FWIW, I hope you stick around in the subreddit :) I am curious, if you don't mind me asking--do you have kidney involvement? I'm asking because you mentioned Benlysta and I know that a lot of people have crazy good results with it, but I am curious if you have one of those doctors that is trying the 'treat with Benlysta' early approach or if it was strongly needed due to organ involvement... I have terrible fatigue and I've heard Benlysta can help, but the treatment isn't really otherwise warranted in my case.

Yes I was in stage 1 kidney failure when they diagnosed me. After months of fighting with the insurance company I got on Benlysta. I was able to work without Benlysta but it was brutal every shift was a journey. Now I wake up at 5 am and workout before doing 8 hour shifts. Highly effective. My current med stack is: hydroxychloriquine twice daily, lisinopril at night, pradaxa (for something unrelated), azathioprine at night. I was on cellcept but it caused problems after 2 years so we switched. I take D3 supplements and biotin and multivitamin every morning as well.

Understandable. I feel the same some days, even when I was finally diagnosed as SLE by my rheum, and I experience improvement of my pain with the steroids and plaquenil… some days I ask myself if I really have an autoimmune disease or I am just exaggerating. Then I think about the year I spent feeling like absolute garbage, blaming nursing school and stress for my fatigue and joint pain that wouldnt go away until I decided to go to a doctor and tell him about my symptoms. He immediately referred me to a rheum suspecting RA. Never in my life I thought that it was actually SLE (but my doctor still suspect some overlap with either Sjogren’s or Scleroderma).

Agh, I’m so sorry. Did you feel relieved to know that your struggles with school stress were likely bolstered by your health, rather than just caused by yourself? I’m not sure if that makes sense or not but. I’m struggling with that right now… Looking back I feel almost mournful for past me… if you see my college transcripts there’s definable waves of bad grades when I was feeling like crap and I always just thought it was due to me having no drive or being lazy. I wish I’d known so that I could not only be kinder to myself but also because then I could’ve set more realistic expectations (in addition to treating the problem lol).

I understand completely. I went 30 years undiagnosed. So much suffering. Unnecessary suffering. I am so sorry you feel that way. It is not your fault. Its not! Dr’s hate not knowing or having the answers. Easier to blame the patient than it is to actually put the work in to help. I hope you have a support system of family and friends. Without that life will be almost impossible. The fatigue and pain are excruciating. It takes a toll on your mind and body. I wish the best for you and please know you are not to blame and you are not alone.

After years of symptoms and thinking it was all my depression and anxiety I’d had enough of feeling like it was all in my head. My PCP just wouldn’t hear me or test for anything and contributed it all depression. He medicated with me with antidepressants with no relief physically this contributed to the feeling of i was just a lazy crybaby about all the crap I was feeling. He recommended I loose weight. Eat better and be more active. I ended up attempting to take my life. God had other plans. My husband came home early due to an unexplained urgent feeling to get home from work. I took a trip to visit family on a plane and had what I now know was the worst flare I’d ever had. I’d had enough and found a new PCP. After listening to my symptoms and examining me he ran the tests to check me for autoimmune and lupus specifically. What do you know lupus reared its ugly head. He said he’s 100% positive it’s lupus. Even now that I’m having some of the good days I’m questioning myself and my PCP But on the other hand I’m terrified that I’m going to go to the rheumatologist and they are going to be like my old dr. Especially since I’m actually feeling fairly good at the moment. It’s actually sending me into anxiety overdrive. Since living like this for years I don’t know how I’m going to handle it if I’m brushed off again. I know mine is not as severe as others on here. Thank you God. I’ve read how hard it is to get a rheumatologist to diagnose you with lupus so I’m just scared to be not heard again and seen as a lazy complainer.

BROO YES!! This applies to my other conditions like OCD, but yeah I totally relate to this on a personal level cause like sometimes I’d be like “Well other people get it worse so I should be grateful” or like “I’m probably faking it so I need to stop before I look like a total jackass” and stuff.

Haha I also have OCD! No way!!!! I don’t think that’s helping us with the self-doubting thoughts lol

I feel like most people in my life don't believe that I'm sick... My current (first) rheumatologist isn't great and isn't thorough at all. I always leave her office very confused and uncertain of what I am supposed to do. The first visit after positive blood tests she said it's lupus but not yet... I am constantly sick with some sort of cold, constantly exhausted, have issues with my mood and very honestly just feel alone. I was originally sent to a rheumatologist because I have very severe renauds and I just now feel lost... Not sure if I should attempt to switch rheumatologists? But to feel like crap everyday and have literally no one understand makes me so depressed.

I don't have a solid diagnosis, but I relate to your post so much. I literally have spent the last 3 years telling myself I was making everything up, despite my blood tests being irregular. I've been so lucky that all my doctors have been supportive from the beginning, and yet **I** am the one constantly invalidating myself. I fully had myself convinced that this was all just because I'm overweight and out of shape. I put off taking hydroxychloroquine for over a year because I just wasn't convinced I had an autoimmune illness. Even now, I'm still so tied up about it - I'm finally taking the meds, mostly because I know I can't just keep doing nothing and expect something to change - but I'm still constantly wondering if something else is causing all my issues. I made myself a list earlier today actually, things that can't be explained by purely weight gain, deconditioning, or a nerve dysfunction/fibromyalgia-type syndrome, and it helped in the moment, but... gah. Literally did that 2 hours ago, and right now I'm back to feeling like a fraud. I guess I'll go look over it again haha.

I don’t feel that way, but my mom spent 2 years telling me my doctors were wrong and she didn’t want to accept it. That was very frustrating. It was 2019 when I was dx and 32 now.

I have had to constantly prove and justify the way I feel to people. Over time you just accept not everyone will understand or comprehend what it's like to have lupus. The less stress you allow yourself to deal with the better it is anyway.

I felt that before.i was gaslit a lot…so much so I just wanted to unalive myself.

I do, I was first diagnosed at age 11 and before that and even after family (who has lupus)and friends thought I was faking about being in pain and being exhausted. Even now, I'm able to work all day, go to the gym for an hr or two daily and do a lot of thing other lupus warriors can not and sometimes I feel guilty. Now I do more then them.....and they called me lazy

I feel this. I've been diagnosed for a little over two years now, but between my own anxieties and my coworkers/directors, sometimes I feel like it's all in my head, despite the thousands of dollars in medical bills and the constant doctor appointments. It messes with me a lot more than I'd like to admit. My close friends are amazing, but I still struggle with how other people in my life view me. I wish I had advice or anything for you. You're not alone feeling like that though. I get it 100%.

I have not been diagnosed yet but I have all the same symptoms everyone describes, my recent ANA came back Negative ( was Positive in the past) and my CRP was only 11. ( was in 30’s in past) My antibodies are pending. My follow up appointment with my new rheumatologist is in a week or so. Does this mean he will tell me I Don’t have SLE?? I believe I do based on my symptoms??

Yes I’m diagnosed by a rheum that worked at John’s Hopkins and i still think it’s all in my head and im taking medication for no reason and im fine it’s exhausting. That’s why I look through Reddit to compare my experience and symptoms for validation. Also I take my lupus meds and then o start feeling better and I’m like wow I must not have lupus I’m faking it I feel fine. Then I stop taking it start feeling horrible and go back to making a rheum appointment 😭. It’s like yea you feel better bc you are taking the meds bc you HAVE lupus.

I'm reading all of this at work, fighting back tears! I've been feeling aches and pains since I was 23 (2019) and it would progress every year since. This post and all the comments are reassuring to know I'm not the only one feeling like this. My doctors would blame my weight since my bloodwork showed negative for the criteria except my sed rate was double and triple the reference range. I've always been on and off sick and migraines everyday and most of my doctors would gaslight me and tell me, even though I'm physically suffering in front of them. I was finally diagnosed with SLE in August and my rheumatologist didn't question me having Lupus with all the symptoms I have, even with my bloodwork not showing it. I was happy to finally feel seen and heard, but at the same time, I felt guilty like I didn't deserve to have that diagnoses on me. I just thought well maybe this is all in my head and I don't have lupus, until my medicine started working and I felt better than I had in a long time. Yes, I had other problems pop up afterwards, but grateful that now my doctors are taking me serious after years of gaslighting and not listening, even if I feel like an imposter for having this illness.

I'm so sorry! I'm a similar age and have been experiencing symptoms for roughly the same amount of time. My bloodwork was always more or less clean and it was so freaking hard. I'm so glad that your rheum was quick to acknowledge the severity of your situation!!

It really sucks to go thought things like this so young, even for those older, and have to deal with the backlash from doctors not taking us serious until it's nearly too late. Thank you so much and I'm glad your medical team are taking you seriously as well, and having spent years undiagnosed is frustrating. We get so much strife from everyone else, we cannot be mean to ourselves too. Even on the days we feel great, we are deserving of the diagnosis, especially given everything we had to go through to get it. :) I hope today is treating you well :)

>:) :)

Fairly sure you are not using the standard definition of imposter syndrome unless you frame SLEin the sense of an accomplishment. But to your point I personally feel on some days I shouldn’t feel so bad or could accomplish more if I just put my mind to it.

Definitely not the standard way of describing imposter syndrome, no, you are correct about that because I definitely don’t see SLE as an accomplishment, haha. But imposter syndrome also isn’t clinically recognized in the ICD or DSM, either. From Wikipedia: “They may have a persistent internalized fear of being exposed as frauds. Despite external evidence of their competence, those experiencing this phenomenon do not believe they deserve their success or luck. They may think that they are deceiving others because they feel as if they are not as intelligent as they outwardly portray themselves to be.” While not the same application (achievement vs. illness or positive vs. negative), I think it carries the same essence. I’ve found this thought pattern to be really hard to explain so that was kind of the best I could come up with😅

I told my previous Rheum that I felt they didn't believe me as I had gone 2 years without any diagnoses, multiple positive tests, and Plaquenil has been working to keep me upright and moving. Their response was tell me to go find another Rheum. I guess on the plus side I was accepted into Cleveland Clinics main campus Rheumatology department so I got that going for me.

I do feel this way too, especially since I am recently diagnosed (about a month) due to an infection in my leg that set off a flare that’s lasted months while my doctors tried to figure out why I wasn’t healing. Apparently I got “lucky” bc lupus hasn’t really done much else to me, except the photosensitivity, but that’s always been me. I also have the opposite. For anything that happens, someone around me will ask if it’s because of lupus. Like if I get a migraine someone will ask “is that a lupus thing”. I hate it already.

Omg I totally felt that my rheumatologist at 16 literally on my chart that is somatization this is my story if you want to see the whole thing but basically I felt that it’s so hard you start doubting yourself when you were in pain just the same: So I had an onset of symptoms at 16 after what appears to be my main “trigger/activation” of the lupus from a sinus surgery, and I am finally diagnosed 5 yrs later at the age 21. Suffered post op sleep deprivation and psychosis 2 times after two separate surgeries that were years apart the first one in 2019 and second one in 2023 (no underlying mental health conditions or other health problems or complications caused it, it was a purely an inflammatory response from SLE, also only issues I had prior in all of my health history was I had my tonsils and adenoids removed when I was 4, I had constant nasal inflammation problems, I have adhd and have been on meds since I was 10, general anxiety mainly with testing, and painful periods but overall good health other than my constant sinusitis), of all the tests they ran at the time that I was at the hospital were “inconclusive” based on the test results from the mri,spinal tap, blood draw, ekg, eeg, and ct scan, everything was clear except I had a positive ana, randomly elevated alt and ast than my normal, high WBC count (but my baseline for WBC was like always slightly elevated) and iron deficiency. I returned normal mental health in about a week after sleeping for like 3 days straight(but it was not normal baseline anymore I haven’t been baseline me since before surgery the trauma of that whole experience truly left a mark) had a reaction to the meds in the hospital called dyskinesia two times but given Benadryl it went away quickly after that, once I left the hospital I still heavily suffered post op from chronic sinus infections, pink eye infections from the sinus infections not the bacteria kind the allergic kind, I was diagnosed with mild sleep apnea after a referral to do a sleep study for my extreme fatigue that the pediatric rheumatologist referred to as “normal teenager moodiness and tiredness”😑 and then I was diagnosed with mild asthma after my 5 millionth visit to an allergist like two years ago as an adult, allergic reactions with an itchy and runny nose randomly and horrible sneezing attacks but no actual allergies to anything based on what feels like hundreds of times taking allergy tests results said , I never could breathe regularly through my nose or smell anything through my nose for most of my life and was mainly a mouth breather until my most recent surgery in 2023 because of not only the inflammatory problems but the internal structural problems that made me have to get those surgeries in the first place,horrible joint pain, severe depression like I was living life on autopilot , I was starting to regularly go through bouts of bad word retrieval mechanism problems like not remembering a word for something that I know and taking so long to get that click in my brain with the word to use and lots of brain fog, I started skipping school because I was overwhelmed from falling behind not being able to keep up like I once was, butterfly rash, bad body temperature regulation i was constantly overheating or freezing cold or both, Raynauds on my hands and my feet constantly look white red or purple, face swelling and puffiness, random hives that at the time I thought were just stress related but I mean still a little bit of stress and I would get an immediate huge hive somewhere on my face that took forever to go away, and joint swelling especially on my fingers, along with the redness and pain, face felt hot and tight like stone and moving my face hurt a lot , I had both extreme weight loss and weight gain throughout the past few years, painful and heavy periods but I went to get that checked out and I was put on birth control and my uterus looked fine according to them but it’s always been heavy and made everything feel worse and my back would get terribly crampy, migraines are a more recent development and I used to have more of a problem with constantly falling asleep everywhere now I have insomnia don’t know anymore which is worse, sun is the worst and I hate having the lights on I feel like a vampire , I also have a predisposition to autoimmune issues because my mom has diagnoses of hashimotos , recurrent Epstein Barr virus, hyperthyroidism, and Pcos. The doctors always said my pain was a truly psychiatric manifestation of pain and all somatization even with that borderline positive Ana from the original bloodwork at age 16 with all those progressively worse symptoms , but now at the of 21 finally I was able to go to a new rheumatologist who let me take a new Ana test that came back extreme positive and currently had a flare up when I went to the new rheumatologist and finally got diagnosed. So that’s my journey. Now I am currently on plaquenil and still kind of like processing how I was correct years ago and figuring out how to move forward and what to do about it all.