Hello everyone. I was diagnosed with Lupus 8 months ago. It was a completely traumatizing exhausting journey until i finally able to get a proper diagnosis and a proper test. I live in a third world country where health treatment and health care is still very low and backwards compare to developed countries. Free health care here is very bad and often do malpractice and abuse patients. I have chronic migraines, chronic fatigue, chronic joint pain, low energy and pale face since i was 12 years old (i am now 20 years old). None of my family or people around my country ever believe me when i say i feel super sick and i couldn't do a lot of stuff. They won't believe because they said i look super healthy outside and my body is not skinny like skeleton so that means i'm healthy. I have to endure all my pain everyday and acted like everything is okay and i'm healthy like everyone else. I always know there's something wrong with me since i was that young.
In the past, everyday i have chronic migraines and i don't know how to handle it and nobody willing to listen to me and help me. Nobody want to help me to get medicine. So i endure it everyday in the class hoping it will gone. I also have fever almost everyday but also nobody ever believe me when i say so.
In highschool, i thought i have anemia. I researched about anemia a lot and i'm 100% sure all the symtomps are directed to me. But as always, nobody believe me especially my family. One time there's anemia survey community that came to my school and have a survey about anemia in highschool student. They took our blood and checked for our hemoglobin. Turned out i only have 8 hemoglobin which means i have chronic anemia. They said the normal amount should be 12. But nobody in the school care about that, especially my classmates. I came home and told my mom about it but she doesn't care and didn't want to take me to a doctor.
I've talked to several doctor (when i was still in school) that i think i might have anemia but they never believe me and invalidate my feeling. Because they see me as someone healthy and my body is not like a skeleton.
After i graduated highschool, i encouraged myself to initiated talked to a doctor in a clinic near my house. Luckily, this doctor is very nice and willing to hear me. She believe me. For the first time in my life, someone is willing to listen to me and believe in my struggles. She immediately took me to a lab for a test and turned out my hemoglobin was 7 and she immediately send me to a hospital.
My mother still in disbelieve and went to hospital with me. Because we went to a hospital that give us free healthcare, the service, staff and the treatment was super bad. Well it's not actually a free healthcare. We paid every month for insurance that is made by our government for a low price and whenever we go to hospital we don't really have to pay for anything but of course the insurance doesn't cover a lot of stuff.
The doctor we met at the time tell us that my anemia is already chronic and i have to go to ER and have to be hospitalized. My mother was in shock and asked doctor if it's possible if we don't have to be hospitalized. The doctor said it's not possible because i need blood transfusion.
I was.... completely traumatized during my stay in that hospital. If you imagine how the hospital look like, it's like apocalypse. Everyone sits in the floor because the chairs aren't enough. The hospital is loaded with people who can't afford treatment. The hospital staff verbally, emotinally and physically abused patients. We have to wait in line for hours until we can see doctor, till we can get number, till we can get medicine. I have to wait in ER all day long until i can get a room and until i can lay down. They gave me IV and the IV liquid stuck in my hand and make my hand swollen but none of the nurse willing to help me about it. My mother keep leaving me alone in the hospital because she doesn't care about me. Nobody was there for me and all the nurses yelled at me and forced me to walk by myself instead of pushing the wheelchair.
I keep crying in the hospital because i was completely scared, hurt, nervous, anxious. And all the nurses would yell at me and scream at me when i cried and blaming me for having an illness and for holding my phone all the time. I was scared so i asked for support from people on internet.. is that something wrong to do? have these nurses ever been in the same position as me? of course not, this is why they can do such a thing.
These nurses work is super late and i have to wait for hours until i can get blood transfusion. They make everything super slow so they can get more money by my stay. They'd force me to stay for more and more days so they can get more money. I stayed for 4 days 3 night there. I have no guardian because my mother would leave me alone most of the time and argue with me. Since my guardian aren't around i asked help from nurses but they ended up physically, verbally and emotinally abused me. When some blood stuck in my IV, instead of helping me, they screamed at me, yelled at me and blaming me. I was only 17 and they treated me like a complete crap. They also forbid me to walk around the aisle even though i was super bored and depressed. If they caught me walking around, they'd scream at me. Basically what these nurses do are 80% abusing patient and 20% doing their job. I was also an easy prey because i was a female minor with no guardian to protect me. Not to mention all my siblings and my relatives make fun of me when they visit me in hospital and they said i'm faking my illness because i look healthy. It's not that i look healthy, they just don't want to accept the truth that i was very sick all along and it's due to their ignorance my illnesses has gotten worse.
After i've been through all the hospitilization and all that i thought my illness and pain would be gone all. But it's not. I still have chronic migraines, chronic fatigue, fever, joint pain and low energy everyday. So two years after, i went to a clinic (not the same clinic near my house) and asked for help to send me to a bigger hospital etc etc.. but they never listen to me, never believe me, and all they can give me is painkillers and antibiotics because they checked my leucosytes were high and they thought it was because of infection. It happened for months that i came back and forth for useless medicine and useless advice. They finally sent me to a little hospital. The doctors in hospital said i have LPR (Laryngopharyngeal Reflux) and i took a treatment for few weeks until i stopped because my auntie was abusing me so bad at the time and restricted me from treatments. None of my family ever believe me and they said i should just exercise, diet, and pray to "God".
After my auntie's abuses are getting lower, i went to neurologist and neurologist can't seem to find the cause of my chronic migraines and joint pain and chronic fatigue. My neurologist gave me some stupid nerve medicines that are of course not going to help me. My neurologist often emotionally and verbally abused me and body shame me. Not to mention she also often invalidate my illness or struggles. She forced me to stay with her treatment for a year or something. We figured i had some typhoid fever at the time and i have taken treatment but then she saw no improvement and she said there's a big possibility i have autoimmune disease.
My family doesn't want to pay for a proper autoimmune disease so i stopped going to hospital for months until my abusive auntie told my mom to took me for a proper test since we have some money at the time. And no, my abusive auntie didn't care about my illness, she just want to prove that i don't have chronic illness and i'm just lying.
I took the test and turned out i have Lupus and Sjogren's Syndrome. Well i went back to a hospital and meet the internist and the internist... she is the worst. She can't really read the test result. She is NOT an autoimmune specialist but she is the only i can go to. I went to some other internist before and they traumatized me and abuse me and invalidate my illnesses and unwilling to listen to me and they said i only have mental issues because there's no way as a teenager i have chronic illness and of course my abusive auntie feel so happy hearing that and that.
I stopped going to that other internist and went to the internist in little hospital and understand a little about autoimmune disease. But this internist can't even understand the test result properly, it says "SLE and Sjogren's Syndrome" but she said i only have SLE... whatever. She was experiencing with me she gave me Methylprednisolone and change the dose every month, 3 times a day, 2 times a day. That's basically the only medicine she gave me besides calcium. Guys.. is that even the correct medicine for lupus? she said i have to take methylprednisolone forever! like what? does she even know what she is talking about? ever since i took methylprednisolone, all i got was feeling worse, horrible big stretchmarks in 70% of my body, horrible acne that won't gone and horrible weight gain and swollen face. And she doesn't want to listen to me and care about me about these crazy side effect.
She is useless, she forgot things i said so easily, she forgot everything so easily, she doesn't care about her patient and often coming late to the hospital, she forgot me as a patient so easily, she often body shaming me, she often doesn't have idea of things she said, she often forgot of things she said the other day, she often invalidate my feeling. Methylprednisolone doesn't make me feel better or healthier at all. But this internist is trying so hard to make me believe that there's an improvement. And once she finally see the crazy gigantic stretchmarks all over my body, she is confused... just face it, she doesn't understand what she is doing! this is a crime and a complete malpractice! she gave me recommendation letter to go to internist in a big hospital in capital city. That big hospital have autoimmune specialist but i have to go to their internist first before meeting autoimmune specialist. I haven't had a time to go to that big hospital at the time. So i keep coming back every month to the clueless internist and she kept forgetting what she is saying and gave me another recommendation letter to another little hospital because she forgot she already gave me a recommendation letter last month. I ended up stop going to this clueless malpractice internist. I also stopped taking Methylprednisolone since few months ago and my acnes and stretchmarks are fading now and i am too sick and too depressed to take care of my skin and go to dermatologist so there is no help for my stretchmarks anymore because they already purple now.
Because even if i go to dermatologist, i will be abuse in the hospital again. The dermatologist my internist recommend me is in the same hospital as her. And i'm telling you, since i use insurance that makes all the treatment free, all the nurses, health staff and everyone in the hospital abused me so bad and yelled at me and screamed at me whenever i go for my routine treatment. I also have to wait for hours until i get to see the doctor and get the treatment so it's completely exhausting, stressful and just make me more sick.
There's no way i will get a proper treatment and a proper service unless i have million dollars or something. There's not much autoimmune specialist in my country and autoimmune disease are still very strange and new for people here so people often invalidate my feeling, not giving me the privilige i deserve, abusing me, not believing me. Everyone in this country who i ever told i have Lupus, they don't care and aren't willing to research about it and continue treating me as healthy people and pressure me to do stuff that only healthy people capable to do so. Especially my family and my relatives, they don't believe someone like me able to have chronic illnesses because they always think i'm healthy and fat (i'm not even fat). So my family and relatives often invalidate my feeling and force me to do stuff i'm not capable to do like house chores, working, this this and that. My relatives still wouldn't want to accept the fact that i have lupus and they trying to say that my other auntie also have lupus but she is not weak like me. Well that other auntie DO NOT have lupus. They are speculating themselves because we are related but that auntie who have autoimmune disease never get the proper autoimmune test to know if she have lupus. From what i can tell and hear from her, she DOESN'T have lupus. All my relatives said i'm just weak, lazy, lying and there's no way i am sick everyday and super weak. I don't know how to say it but my relatives/family do not want to accept this fact because they don't want to give me the special treatment and the priviliges i deserve. They don't want to make me believe that i deserve to be treated good. They always compare their mild illness with my chronic illnesses, they'd say "oh i have gastritis but i'm strong" "oh i have typhoid but im strong" "oh i have weak immune system but i'm strong" um... hello? THATS NOT CHRONIC ILLNESS.
All my family and relatives doing is abusing me and invalidate my feeling and illness and told me to just exercise and diet so i will be healthy. They believe that if i'm skinny and exercise, my illnesses will be gone. I'm forever laughing inside my heart of their stupidity. They said if i'm getting fatter i will be obese and scaring me etc and of course telling me i wouldn't have a partner. They are disgusting i know. I'm not even fat.... jeez. I'm just short and curvy!
I believe one of the reason my lupus is going worse is the abuse i've gotten everyday in my life from my family.
I don't know what to do anymore. I haven't had a chance to go to that big hospital because it's 4 hours round trip from my house and because i don't own any vehicle and uber is too expensive i will have to go by train which are full of people and it will give me big risk to catch covid during the trip. Not to mention i will be completely sick and exhausted during and after the trip and if i have to go there every week i will be completely exhausted. And in that big hospital, since it's government's hospital and i will use my insurance. I will have to wait from 8 am to 8 pm until i will finally able to see doctor, to get my number and to get my medicine. And not to mention i heard bad reviews of that hospital that many people are verbally/emotinally abused by the nurses, health staff and doctors so it's not even that better and i'm not sure if the internist in that big hospital will send me to an actual autoimmune specialist in the same hospital. And there's no guarantee the autoimmune specialist they claimed is actually know what they are doing.
I just know all these health staff and doctors wouldn't even be hired in hospital in america, uk, europe etc. Even as a cleaning service they wouldn't be hired for how stupid and abusive they are. And most people that have autoimmune disease seek treatment overseas because they know the health care here is that bad.
So i am not in any treatment for months and i only take vitamins and calcium once in a while because i have no one help me with that (it's hard for me to do basic task). I still have joint pain, muscles pain, fever, chronic migraines and chronic fatigue everyday and i don't know what to do, almost feeling like giving up.
What hurt me the most is the fact that almost everyone in this country is very ignorant and aren't willing to research about lupus and often invalidate lupus's patient feeling and struggle. They often underestimate me and think that my struggle is not that bad. It hurt me so bad that my family, relatives, friends/classmates aren't willing to understand and offer support and even the proof is right in the paper they still pretend that it's not true. Everyone in this country just body shame me and invalidate my feeling and underestimating my illness. Even a lot of doctors body shame me and underestimating my illness by saying "mannnn this is so weird that your body is chubby/fat but you have chronic illness and suffering everyday" and i'd say "Well... lupus is not about skinny/fat. There's not really much food we have to avoid and i'm suffering everyday i have migraines, fever, and chronic fatigue and joint pain everyday" but those doctors only look at me with disbelieve eyes. Yes of course they'd never believe me. No surprise.
I need advice,
What are the treatments you guys have to take for SLE and Sjögren's syndrome?
Can anyone tell me their experience with Methylprednisolone? are they really supposed to be taken so much forever? (my Methylprednisolone was 8 mg per tablet)
Are lupus really can be taken care of with internist or we really need autoimmune specialist that specifically in lupus?
What should i do about my joint pain, chronic migraines, chronic fatigue, fever and excessive sweat? What can i do during these times without medicine and treatment? I'm afraid something bad will happen to me and affect my liver.
The only thing that keep me going is just the hope for future and escaping this house and this country.
Newbie in need of reassurance
Need help and advice please
Are we there yet?
How can I help
