People are such unaware jerks!

I have lupus and I have dark circles which I hide under cover up,I have pale lips I color in with lip stain/lipstick,pale skin I brighten up with concealer and blush,sad/tired eyes that I use mascara eyeliner and eyeshadow to perk up.I try to look well .I want to look well.Even tho i'm not feeling well.I'm so sick of people and their comments or looks when they see me parking in the handicap spot.With the card my doctor prescribed me for my conditions that go beyond lupus alone.I have scoliosis, I have mild deterioration all the way down my spine and moderate deterioration in my lower lumbar bone and between my hip and backbones.Which causes CONSTANT SCIATICA PAIN that shoots down my rear,thigh and all the way to my ankle.I also have chronic kidney stones I pass at least 6 a month.None of this is any of the public's business at all.I shouldn't have to explain my medical history and diseases/problems to any a**hole in this world!Unless they are MY doctor,THEY NEED TO MIND THEIR OWN BUSINESS !!!I sometimes have to use the electric wheelchair at walmart.I used to be bothered by the looks but.I'm starting to just not care and have a bitter outlook on people in general.Why should I have to look sick to prove to them I'm not well.I have SSDI and a team of great doctors and a lot of close family members.They are the only ones that I care about what they think.I hate how judgemental strangers can be.OK RANT DONE AHHHH it feels good to rant a bit.

28 Replies

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  • "Most people are good", but most people are also horrible. "Good" people are actually pretty evil in many ways they don't consciously realize.

  • Rant away. Im sure we have all encountered this sort of ignorance. It is tough to deal with in the first place and then even tougher by justifying everything we do. I have your back

  • Thank you!I get get a good laugh from my rheumatologist tho .He asked if I had a rash on my face ever?I said "yes I do now why?He said"I cant see it.And I said"thats the point of me wearing cover up.He laughed and told me I had to take a picture of the rash so he could see it.

  • I actually make a point of not wearing makeup to appointments as if I do they can't see effects, no makeup, no nail polish (my nails are a nightmare, it's why I cover them up) and let them see the Real Me. As I scared the nurse last time with how much I had deteriorated, I guess it works. In a 'Yay, I look sick! Oh, wait...' kind of way :P

  • My nails are horrible they break over my nail beds and they hurt they are brittle and they look like scales.

  • Yeah, shellac over those bad boys! I am learning to love fingernail polish, I swear this illness makes me Learn to Girl more than I've ever done.

  • Lol I do have a large collection of nail polish.Maybe I will start painting them again ;)

  • Wouldn't it be great if people were less judgmental and more trusting? It's a symptom of our cultures, politics and religions.

  • I blame it on the pervasive selfishness of our society - in this case, why should you have an advantage (disability parking permit) and they shouldn't? The fact that the "advantage" comes with a heavy burden doesn't seem to register.

  • I agree, I sometimes wish when you come across those people you could just touch their hand and they could feel what you feel just for a moment and know how it is.And how hard it would be to get out of bed and want to go anywhere do anything.

  • Hi Julietmombless,

    I stupidly thought then when I would mention to someone that I had lupus, that they would then run off and look up the disease to get an understanding of it. (Not the case as you will know, the normal response is..."oh I know someone with lupus"), and then it is case closed.

    You already know that when you look in the mirror and you see this sicky looking person looking back at you, it gets you down, if, a little bit of makeup or whatever else we can grasp a hold of to perk ourselves up, helps, then grab it!!!!

    People, are ignorant, ignorant is quite a descriptive word, I was ignorant to lupus until the words were said to me at the hospital. Other people are in their world and you are in yours. If other people do not have compassion or any inclination of an understanding that disability can be invisible or can show itself slightly, that is their issue, because eventually in life something similar will inevitably happen to them in some form or other, and then they will not be so ignorant!

    People with disabilities are constantly being pushed along the perhaps unethical thought process that "they cannot give up" and "keep trying", and when you do, you get quizzical looks that their is nothing wrong with you. So just because you are getting on with your life in the best way that you can with dignity and hope and spirit, doesn't mean to say that you do not suffer, and if the general populace are 'jerks', it's them who have not enlightened themselves and are small minded.

    Keep looking good, keep parking in the disabled bay, use anything that you can to make your life easier and more pleasurable.

    All good things to you and yours,

    love and hugs

    goingaroundthetwist

    xx

  • Lol I know exactly what you mean...My sister in law said"My step Mother has it and works full time blah blah blah..I was like"ok good for her.There is several different types and she may not have it as bad or the same problems.

  • I completely understand you. I'm the same way. I just don't wear any makeup. Never had or have. I also have a handicap parking thing, and I just started using those scooter things that the store have. I just had a fistula repaired in my stomach. So, I am having trouble walking around and I get so winded. So my daughter says, mom ride the scooter. It is so hard for us to sometimes get around. I too get so freaking tired of people staring and explaining myself. And at the end of the conversation, they ask the most stupidest question, you don't look sick. I am really. So I feel you, sweetie. Wishing you the best of luck, always. We all need to stick together. Praying for a speedy cure. Hugs.

  • I feel very badly about my last doctor visit.It was my first 1 with a rheumatologist.He seemed like he was just mmmm,I don't know saying "you have this ,we will find out which kind of lupus ,your organs are still good ..Good luck. I didnt get answers or anything hopeful at all.

  • Yep I'm sick to death of ignorance. When revealing to my boss I have SLE and a renal transplant etc my manager obviously knew nothing about it and hasnt bothered to research since and my boss said he knew a girl with Lupus that was it! Then knowing I have eye issues and light issues especially with my eyes the desks get moved to face dirty great big windows! They just don't get it at all. I got put on overtime without asking me, wouldn't have minded if it was at my local base but it wasn't, I already travel most days to various surgeries to work. I didn't need another day as well, I'm recovering from tonsilitus and nasty chest infection. Just been diagnosed with discoid Lupus too! Hey no, as long as the make up and wig makes me look well then I must be so! Rant joined in with lol!

  • I have kidney problems as well tho not related to Lupus I guess.I have a large amount of kidney stones.But other than that they are working ok.I'm really confused about everything with this disease.I lost 1 3rd of my hair .My nails are brittle they break on top of my nail bed even.And I have had a temp of 101 to 102 for the past week.Its scary. I don't know when to go to the doctor sense I was told I would run a little hotter.i have 0 energy like I could close my eyes and be out.

  • Sounds like a little trip to the GP wouldn't go amiss and maybe some routine bloods. Feel better soon x

  • I wouldn't worry about the opinions of healthy self righteous imbeceles. Self righteousness is just a way for very flawed & imperfect people try to make themselves feel better about themselves at other people's expense. Pity people are capable of doing it to someone who is so ill they have earnt the right to what is essentially a medico - legal based document that you display on your car.

    When I was younger and without mobile phones (48 now) whenever I became ill or a bit faint & wobbly in a public place the assumption was that I must be a drug addict and I met with some similar self righteous looks. Not very helpful when you're in need of assistance.

    Try not to let experiences like this chip away at your faith in humanity. There are 'some' good people out there. You just have to be very discerning.

    Essentially - in public settings, especially highly urbanised ones, people tend to behave like moronic sheep and will see you as little more than a brief sound bite. If you sat down with some of them one on one - free from the street scape they would act and behave very differently.

    Unfortunately Lupus exists in a grey nebulous area of disease. Too hard for some people to wrap their tiny little minds around.

    Sometimes I think we should just say we have a condition that is equivalent to cancer of the immune system. (Not medically accurate) - but in short hand terms - something they could quickly conceive of mentally

  • This is just 1 small on of many tho.When people get to know me like you said they know I'm sick but strangers to assume.I wouldnt assume someone is perfectly healthy with a handicap sign using a riding wheelchair.But I know what you mean try to be an optimist.I do try.

  • I know its rotton. I actually have a similar problem with contantly dealing with people who aren't that great.

    I think when you're suvival instinct has become elevated from dealing with Lupus as well as the physical and mental vulnerability that comes with it, you become more sensitive to signs of other potential dangers: ie- poor human behavior.

    I've noticed healthier people are more able to brush these kind of things off.

    Unfortunately these experiences have a culmutative effect and you can end up thinking humanity is total scum.

    I 'try' to replace these thoughts with - 'most people are stupid and ignorant pack animals'.

    But I know what you mean..... : (

    In truth I'm a bit jaded about the nature of humanity myself. I just have to constantly remind myself that there are 'some' people out there who are decent and good, and always remind myself to be very discerning about the friends and family members I come into contact with. With an illness like Lupus you need people around you who come in reasonably high on the empathy scale - otherwise their behavior will become distressing when you're at you're sickest and need all the help support you can get.

    I think the only way to deal with one too many obnoxious people is to forget about them as quickly as possible. Don't let them find a place to live in you're mind. Speak to a friend about what happened and then put it away forever. Replace it with something positive so you're mind isn't cluttered with other people's character flaws.

    Good Luck !

    I know its a hard one to come to terms with.

    x

    ps. If this issue becomes a real burden for you - and if you're able too - Trauma/PTSD coucellers can be appropriate for people with Lupus.

    We have to deal with way too much from every angle sometimes.

  • I feel like I'm going to die I have had a temp of 101 102.5 at the highest for 10 days straight now I have no idea if its normal.And the rheumatologist said wait till my appointment which is still a week away.This can't be normal right?

  • Its definitely not right for you to suffer a protracted temperature, even if its mild. This is especially so for a Lupus sufferer. But in my experience, a too slow a response from Doctors is an unfortunate normal. An unfortunate 'normal' Lupus people cant really afford.

    Preventative medicine should be your Dr's first priority, not waiting and mopping up the mess later on.

    I'm posting from Australia so I'm hoping your medical culture could be better?

    I've actually had a very bad run with Doctors lately so I'm probably not the most rational person to ask about this particular problem.

    I would however, if you are able - seek out a GP at the very least. Don't sit out a week suffering and wondering what's happening.

    Please note: The medical (temperature) side of things is not my strong point, but apart from all the squillion different ways Lupus can effect you (including temperature wise), we are not very good at fighting off infection. Its possible you might need antibiotics ? But make sure they are the strong ones. We need more powerful ones than what GPs prescribe for normal people.

    Waiting for Doctors to act in a timely fashion is a real issue for SLE sufferers.

    I think it might be worth you doing a re-post on whats happening to you so you can get some wiser medical advice and better tips at harassing Dr's than I can give you.

    However, follow your instincts on this one. If you believe you need to see your Rhuematologist now - then pester him till he gives in. It doesn't matter if it turns out not to be serious. We have to be hypervigelent and constantly practice the preventative medicine ourselves. We all cop the 'you are time wasting neurotic' tag for doing this, but it is the only way for a lupus sufferer to stay healthy.

    I really hope you get this one resolved quickly,

    x.

  • It's still High 99.9 I have a appointment with my pcp tomorrow hoping he can help.He is the one that first realised I have something weird going on.And I've been on SSDI since 2010 with no answers of why I feel so crappy.I also have a bunch of other stuff going on .But I cant remember anything (one of the things)..I feel weird mentioning it at all I couldn't remember my own address while making an appointment.I know my address!I had to look at my ID.That's not normal it could be from the fever I dont know.

  • Hi Juliet,

    I don't know what a pcp or a ssdi is but I'm pretty sure with what you've got going on you really need to have a proper and thorough medical investigation. Not remembering your own address must have been really disconcerting. It could be you are seriously run down and stressed. Having said that - its seriously important that with Lupus you treat it as being something that is potentially being caused by a flare. Definitely mention it to your Doctor - don't be embarrassed by it. Its not uncommon for SLE to cause some memory problems, but it is important that it is investigated properly and treated properly, just like any other Lupus symptom.

    I'm sorry you've been feeling so awful and uncertain.

    I really hope your Doctors can resolve the problem for you quickly.

    Good Luck with the appointment !

    x.

  • honey i feel so sorry for you

    no one should have to go through life like that

  • It is a pain in the butt,tho I have to say there is always worse.Like some people have lupus and cannot get SSD like I have and it does help.My soon to be sister in law has Lupus as well .She gets dizzy and people have asked if she was on drugs!And she has no medical insurance, no income nothing.I feel terrible for her.She thinks I'm worse off and thats why I have SSDI.But I think its because she has given up on it completely.I've tried to help her gave my lawyers #.She falls over walking from her bedroom to the kitchen.We have different symptoms, but she is very sick.She has fallen several times,I've passed out several times.She is going to try to get a job again.Which you need money to live so I don't know.I worked until I got on SSI .My job knew I was sick I had to call off a lot ,miss weeks at a time for surgeries. But they were really nice about it.Most jobs are not I got fired from being sick my whole life.I had several different jobs .Once they realized I have all these health problems they would"let me go,Replace me while I was out on medical.Or just be extremely rude to me so i wouldnt want to work there.When I was under age and too young naive to think about sewing.I got fired while in the hospital from Dairy queen,they called and fired me while I was still not even aware like was all groggy from being put to sleep.Mcdonalds when I came to pick up my check,the manager cursed me out because I couldn't make it back sooner then the doctor said.I was 17 and pissed off,so I waited until it was her shift and she had to count on me to come in to relieve her, and I called right before she was supposed to leave and quit,just to get her back lol..I had a few places that were nice and understandable tho.The sicker I got at my last job I had given 2 weeks notice that I couldn't even work they were very nice and understandable.I passed out 3 times while working there.It was unsafe for the place to keep me working there.

  • I HEAR YOU LOUD AND CLEAR! I get the same looks...but my family an close friends act like nothing is wrong,an don't want to hear it I'm fed up with the (everyone lets pray for ______ her back and hips are hurting and she couldn't make it today or so an so has a headache she can't do ___) I mean REALLY while I'm sitting her the whole time in pain an I even tell them an it's like I'm not even talking or they say well you just got up and walked down the hall and was fine now all of a sudden your not! An when I can't make it somewhere no one calls or cears they just say she just over slept HELLO NO I FINALLY GOT A LITTLE SLEEP AN STILL WOR OUT AN IN PAIN BUT THANKS FOR CAREING!! I'm just sick of it if you can't do something for them or what they want how they want they just thank you are lazy an don't even want to talk to you!!! Yes I really had to say all that! Lol I really feel printing all this a putting it on the walls where these people are but that would be mean!!!

  • I would have to say without knowing them, just from what you said. They are uneducated and kinda mean.If I were you I would print out some paperwork from online or from a doctors visit about your symptoms and dealing with LUPUS.Take a magnet and put it up on the refrigerator!.I have been sick for a very long time.Everyone in my family had known this for years.Without ever being diagnosed until this past Christmas eve they never thought I was lazy or faking.Even tho Doctors said "we don't know what's wrong with you.I even had a Doctor when I was 16 ask my Mother"do you think she is faking?His opinion was that, I Needed to see a therapist not a medical doctor!That was a ER Doctor and I had been throwing up BLOOD for over a week.I had a ulcer in my stomach and it burst.We later found out through another Er visit short after .They admitted me did a endo and colonoscopy.Found I had small ulcers from the top of my stomach by esophagus threw my intestines. And 1 had burst and my stomach kept filling with blood then it would make me sick and I would vomit!So I'm very sorry your family and friends are that way.I feel terrible for you!At least I can come home and complain to them about society... SMH

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