People's view on SLE

Hi,

I was diagnosed with SLE approx 7 years ago. As the years have gone by it has got worse. The one thing I find really hard about this disease is that you look "OK"! You may be in absolute agony with the pain but you look ok so people think that you are not genuine. Also, trying to explain to people about the fatigue, well, they just say everyone's tired!!!

If you had a broken arm or wound of some description people would be more understanding because they can actually see there is a physical problem whereas with SLE, you can't actually see anything unless you are suffering from a flare up.

I am a security officer at an airport and work shift work. I have been doing this job for the past 2 and a half years and am finding it harder each year.

32 Replies

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  • hi saraholy i understand what u are saying lv i got diagnosed with sle 13 yrs ago and was a care-assistant in nursing home ,i cut my hours down cos was in so much pain ,that didnt help so went on night shift and that was worse ,,my specialist told my to leave as my job was not suitable for me ,and not good for my sle ,,,,,, like u say ppl dont see that u have this illness so dont not how u feel and a lot of ppl dont understand wat we are going threw ,i would just like to feel normal just for 1 day ,,hope u feeling well soonxx

  • Hi Saraholy and Gummy, couldn`t agree more I sometimes meet people out who I havn`t seen for a while and they say "how are you"? then before you have time to answer they say "well you look well" unless you have this awful Lupus I dont think anyone will ever understand the pain and fatigue thats why these sites are so important as we read and answer the questions we know we are not alone

  • It is understandable that anyone that has not dealt with Lupus cannot understand the inner turmoil that does not show on face. I have learned to just smile and change the subject when someone tells me how good I look. What is really hard to deal with is when your doctor says, "Well, you are looking good, no problems then!" I right away feel like a hypochondriac when he says that and then don't tell him everything I had planned on. Doctors should know that just because your face is looking clear today does not mean your body is, or that your face could be cherry red by bedtime.

  • I have only recently been diagnosed but I have struggled for the past 2 years to get to that diagnosis of lupus sle and in that time everyone at work knew about what I was going through. I'm all for sharing my burden with everyone, so they got step by step to the weirs world of sle, whether they liked it or not. Maybe at the beginning there was a bit of scepticism about so many different pains and reactions but by the end of it everyone was happy that at least I know what the problem is. I agree that it is a problem if colleagues and line managers don't believe you, I would hate them thinking I am not pulling my weight because laziness rather than illness. I would say that constant reminder of your fragile state would help, I know that sle is not yet classed as a disability but I doubt line managers of people with sle would not be cautious in your performance reviews to ensure you are not unfairly assessed if you keep reminding them. Or maybe I have been lucky in my work environment.

    The thing I notice however is that sle progresses to a worse state over the years. When I was diagnosed I read everything I could about it and the thing I saw everywhere is that an sle sufferer is expected to have a normal life expectancy as the rest. But nowhere did I see an indication of the quality of life of an sle sufferer or indeed a suggested worsening of the disease. I see yours has gone worse over the years. Is that despite pain management treatment, steroids, anti-malarials, etc? I know that everyone is different but it would be useful to know your experience?

  • Hi Purpletop,

    I think the fact that I work shift work at the airport hasn't helped me coping at all. I have today, just finished a 12 hour day and will be doing 10 hour days for the next 2 days. I'm 47 and have a 5 year old!!! Not planned and i wouldn't be without him. It's very hard work and tiring

    My rheumatologist wants me to go part time as it would help me immensely. I know they are right but unfortunately, I'm not in a financial position to enable me to do this.

    She just doubled my plaquinil, my antidepressants and is now putting me on something for my cholesterol coz apparently people with SLE suffer with high cholesterol.

    Hope you have plenty of good days and only a few mildly tougher ones. X

    Take care and if you ever need to chat or be lifted , just whack a blog on and I'm sue we'll all be there for you.

    Look after yourself

    Sarahroly

    Xxxx

  • Lupus is one those diseases that is very much hidden. People can't tell by looking that we're sick. Some of us have rosy cheeks which makes us look robust.

    To be honest, unless someone has had an some experience of lupus or autoimmune disease, it's difficult for them to understand. Before my husband retired, he worked with a young woman with lupus. It affected her differently to how it affected me, but my husband understood and sympathised with her.

  • I couldn't agree ,people say to me you look so well and I say judge a book by its cover cos if you do and open it up you may find on every page a typo, pages missing or it sends you to sleep , that's lupus for you , only I think my pages are falling out and getting frayed around the edges x

  • Hi there, well done to you continuing to work shifts that must be very tiring. I agree with you totally it is so frustrating when people just think your a moaner! Ive sle 2 years now and was critcally ill with it before being diagnosed as i looked so good, but my organs were on fire! I was actually at casualty at the weekend with flare - sob, lungpain & dr said well shes looks to good to be very ill! How judgemental when i feel like i cant breathe with pain. You have my sympathy totally although sometimes i like the fact that i look good as it gives me a little confidence when im with friends, im only 34 but feel 94 lol! Take care x

  • This is one of the hardest things of SLE - unless your rash is horrid and your hair has fallen out, people can't see what's wrong with you and find it hard to understand the level of pain/ tiredness. I used to be an employment lawyer, and worked 6am to 1am regularly. When the lupus started taking hold, i couldnt get to work some days til 10am. My lateness started to become persistent and it caused bad feeling with colleagues. My family were supportive as they knew i had been a real hard worker. I left my job as I couldnt manage the long hours. My employers never knew what was wrong with me. They did try to keep me, by offering part time work, but I had to go as I felt a fraud. It was such an effort to 'perform' and converse with colleagues when my brain felt like mush. Sadly my husband ignores my lupus. He doesnt want to hear about it & gives me no sympathy or support either. If i say im tired, he replies hes tired too! I find he it hard as he's sympathetic to others, just not me. He still thinks i should be the tough lawyer. He commented i've turned into an old woman and just talk about my aches. Well, it does get progressively worse, but all we need is good support to help us feel human.

  • I really do feel for your situation......it is so very difficult when the person who sees you on a daily basis cannot (or will not) accept what is obvious.

    Until I persuaded my husband to see the DVD produced by Lupus UK, I don't think he really understood - he thought it was something I would recover from eventually, if I kept taking the meds! I only have to catch a cold now, and the immune system goes into overdrive! Even now, I think he gets embarrassed, explaining to family/friends why I'm unable to keep to pre-arranged plans sometimes.

    On the "good" days, I try to make an extra effort to do something interesting with him (we are both retired) and not to talk about the SLE at all. I guess, for our partners, it is frustrating too, because they can do very little to take the pain away. Because I am so forgetful (with "brain fog" most mornings) he helps me so much by managing my drugs "cocktail" and making sure I take them at the right times - especially during a flare,when time loses it's meaning! He's also pitched in, helping with the heavier household tasks.

    Are you able to give yourself a "girlie pampering day" every so often? The "tough lawyer" is a woman too - and this would be so very good for your morale, and his tactless remarks might not be so hurtful...... Good Luck, we are all behind you!!!

  • oh dear i know where you are coming from - oh you so look well, are you working now,ive never seen you look so well, u tired what are you doing to leave yourself that tired are just some of the comments i get

    struugling big time this week ,nobody cares.nobody wants to know sick and tired of being tired and as for my husband id be better of living alone hes so insensitive, rude and downright ignorant

    fuzzyrudd you are so right id give anything to be normal if thats what you call it for even a day or put other sceptics through this fo one day to see how they feel

    sorry about rant feel so tired and sore cant stop crying,cant get anyone to understand

  • Ellie.......WE understand! Have a rant whenever you feel like it.

    One of the worst things about this illness is that it does make us more dependent, and reduces our choices. I'm sorry you are so unhappy and feeling alone in your battle with it.

    Is there anyone in your immediate family or neighbourhood that you can talk honestly with? Have you told your GP about the constant fatigue, and feeling low?

  • i find it hard to tell anyone not even my kids know. doctors imao are actually the worse culprit oddly ifeel like hell all the time but grin and bear it mostly...sometimes you just want to cry!

  • It's so frustrating. I have lost contact with family members because of their ignorance and painful comments. This terrible disease is hard enough to cope with, without hurtful remarks. Refer people to "but you don't look sick . com." look up Spoon Theory. It's so enlightening. My G. P is amazing. He rang me today to update me on an appointment for my MRI. Xx

  • Wow! We all have such different experiences...........but they all resonate.

    I dont think I would have been diagnosed if I hadnt got discoid lupus, I have both. They dont always appear together.,,,,,!

    PURPLETOP - You have been quite lucky. I took my employer to a tribunal, as I was diagnosed in the first year of my job. I had kept her informed all the way but she made life increasingly difficult for me until I went off sick. If Id had her even slight understanding I could have coped. I had to give up the case though as could not afford a Solicitor.

    I met my partner when I was having a bad period and he is the best thing that has happened to me as far as someone being supportive. Before this I had very little support, no one understood. I dont know what would have happened to me if I had not met my partner. FUZZYRUD- you need support!

    The wierdest thing of all is, sometimes I dont believe myself...........silly really......

    Take care people. x

  • I know when you have lupus some people do

    Not understand what you have and how awful

    Some days can be.Also I work as a nurses

    Aide so helping take care of other people can be

    Very hard to at times.so I know everyone that

    Has lupus has a lot to go through.And lupus

    Has so many different symptoms in people that is

    Why it is hard to get treated.And my self

    It is hard to explain to drs everything that I feel

    Because some days I hurt and stay very tired and

    Get stiff feeling after I have worked. I hate feeling like

    A very old woman should feel.i miss feeling good

    And wanting to do all the things I use to enjoy.then

    When you start getting new sytoms along the ones

    You already have.i know things can be worse so I try

    To keep telling my self that.But these sites help us

    Cause we can really talk about it with people

    That understand.

  • Hi all,

    Just got back from seeing my rheumatologist at the hospital.

    First thing she told me was that I shouldn't be working these shifts and that I should live, get this, a "luxury lifestyle", coz that's what they suggest for SLE sufferers. If only hey!!!!!!!!

    Unfortunately, I'm not inhe financial position to be able to go part time at the moment. I'm 47, owe money, not a huge amount but enough not to enable me to go part time. And forgot to say, most importantly, I've got a wonderful little miracle boy of 5 and a half. I call him my miracle boy coz they said there was a good chance I might not carry full term.

    My rheumatologist has increased my plaquinil, fluoxetine and now is putting me on something for my cholesterol. Deep joy

    Hope everyone is as ok as you can be. Got to sign off now coz I've got to get to bed as I have to be up at 03:00. I'm doing a 12 hour shift tomorrow starting at 05:00am.

    Take care lovelies xxx

  • A luxury lifestyle is definitely something every lupus sufferer should be entitled to, i know i should! When i have/had my health I was a student & liked nothing more than scouring second hand shops, living on a budget. Being ill you need all the comforts life can offer, but like yourself for me & i expect many others it is financially impossible. Take care. X

  • Hi everyone just joined the site, I was diagnosed with Lupus eventually a year ago after suffering for about 6 years with aches and pains and tireness. On plaquinil, this week on new meds azathioprine, not sleeping very well haven't had a decent nights sleep for over 18mths. Not coping at work memory afffected thats the frightening part, wish i could finish work but with a stroke of a pen I have to work 6 yrs longer now. I'll keep doing the lottery, i'm the opposite people keep telling me i look ill, husband very supportive and worried. i don't seem to want to do anything not interested in doing anything my manager thinks I'm being negative & defensive spoken to her about it but she is not interested. Like everyone fed up with feeling like this all the time. Will I ever feel normal again!!

    Bye all

  • Hi Sueannb - how awful to have 6 years of symptoms before you realised what was wrong!

    You will find this Blog site very sympathetic and informative. Sometimes, we "lupies" find it hard to be positive all the time, and it is good to have an honest blast about what a bummer the whole syndrome is!

    Would your Manager be prepared to read the small booklet, obtainable from Lupus UK?

    Sleep can be quite an issue with many of us...... the after effects of sleep deprivation can be very similar to lupus/fibromyalgia symptoms. No-one has come up with a reason why our sleep pattern is disturbed, but there are things we can do to improve it. (Maybe a chat with a physio will help you....).

    My GP has put me on Nortriptyline (a muscle relaxer) and this has been beneficial to me.

    I also do not "push it" . Instead of sticking to a regular time, I just read until I feel drowsy, even if this is in the early hours of morning. I do believe that it's quality, not quantity of sleep that matters.

    Here's hoping that things improve for you.......

  • I know exactly how you feel. "But you don't look sick to me"! I hear that all the time about myself. I also have chronic lymphocytic leukemia & lymphoma which are invisible to the human eye. I may be smiling on the outside but on the inside my body is screaming out with pain.The lupus has attacked my hip joints. I have had both hips replaced within 6 months between each surgery. My rt hip was done in May 2011 & 3 weeks the femur "just fractured" and what pain! I had the left hip done in December 2001 and recovered nicely. I continue with rt leg pain (thigh~~~where the femur is) and I was told that my femur had never healed!! My lupus had nothing to do with THAT but the lupus did destroy my joints.

    Make sure you have a good Dr. and one that really cares for you as an individual. One that will communicate with you. I have had lupus for 30 years. The CLL & lymphoma came in 2001. It is not uncommon to get CLL along with lupus.

    I know what each one of you think & feel and I just wanted to share my story and hope that God Bless all of us. :-)

  • Thank you to everyone for your kind words of support. It means such a lot to me. The sad truth is that I'm just waiting patiently til the day my husband leaves me. I have come to accept that this will happen one day - he says our lifestyle is not what he had 'bought into' when we got married. I also discovered he's been privately emailing a young girl from work (shes 17 years younger) and flirting. When I confronted him, he said it was just harmless fun and that life has got boring. I can't afford to move out and, since leaving work have got debts. So, I plan to live ignorantly, until I can do something about it. I do know that it's better to be alone than have a partner who is shallow. I look back on when we first got together and remember how he pursued me and we were in love. Now i know he sees me as a burden. My words are often jumbled and i find it hard to express myself succinctly which drives him mad. I have booked a clinical hypnotherapy session next week with the aim of controlling the pain better and allowing me to release my hurt feelings in a positive way. Its not cheap, but the lady has a great reputation. To those of you who have caring partners, cherish them, as it's blessing. Wishing you all good health x

  • yea im in a position where thers no relationship of any kind but icant move out as i wouldnt be able to look after myself like that hes acting like a matyr and thinks its all in my head as for close family i have a sister who cant understand the tiredness - well wat were you doing to leave you tired - am so tired trying to explain to them- its al just useless. i find it easier to pretend im fine

    fuzzrudd if you dont mind me saying your husband is a rat -mines no better= and if he did go you wont know yourself. i hate beng stuck here wit no support but wil say no more cos the more i think the more the tears cum

  • He is a complete rat, yet he genuinely believes he's a great bloke! I just dont have the strength or ability to do much about it. I have become pretty much a recluse these days. I find thats easier than keep cancelling arrangements and letting people down. It really saddens me to hear your going through a bad time too with your partner. I know if it had been the other way round we would have been supportive and loving. It takes something like illness to realise how much someone actually truly cares. I hope that in time we both find the strength, courage & financial means to be able to move on. take care xxx

  • I feel for you fuzzyrudd. My daughter said after a disasterous relationship, lonelyness is being with the wrong person. I do hope you find the the right person. x

  • Well.....so much for in sickness and health! You'll be well shot of him. I have pain at the moment, but that's my fault. 4 years ago on my postal round, someone suggested that I enter the local village show. I had 3 entries, came 1st 2nd and 3rd. Then the following year I went all out in the baking section....shared the cup, with a WI lady. For the past 2 years I have won the baking cup outright. Last year I was diagnosed with polymyalgia rheumatica, and all the baking had abad effect on my back. This year I decided to only do the baking and left out all preserves and I also entered quite a few flowers and I didn't go out to win. People get a lot of enjoyment. I entered 16 items and came out with 13 prizes and the cup. My hands and fingers are really painful today. I had to take cocodamol yesterday as my back hurt so much. I don't have a job anymore as I also have Raynauds and can't do outdoor work anymore. I am signed off to the end of the year. Royal Mail paid me off as I had been with them for 30 years. I have enough for now not to be struggling and have had benefit from an extra mortgage policy that pays for sickness for a year.

    Next week I shall be able to have the long awaited blood test to find out if I have sle. I never hear about my blood tests. My rheummy is in Northampton. regards Liz

  • Mines in Kettering.

  • well...small world. I live in Kettering

  • Hi Liz,

    I went through years without being diagnosed, but then decided to go private coz I knew it was more than they thought. Within 5 mins, he had diagnosed me, pending my bloods xx

    I love that doctor forever as he actually confirmed my concerns xx

  • i spend most of the time in my room only come out when want fed or coast is clear mine is house bastars excuse my language and street angel talking to everyone and very chatty at home he cant speak two words and turns tv up if you try to speak to him

    lowicklady55 keep with us try and keep your strength up for you will need it for the authorities let us know how you get on

    helen

  • its a funny old world!!

    I am currently waiting for a diagnosis, but know in my heart of hearts that I have SLE.

    My sister has it and we think my mum had it too, but was never diagnosed, she lost a kidney when she was 50, but sadly died of COPD 3 years ago.

    I have all the symptoms of SLE, but so far only had a ANA blood test which come back negative.

    I am very lucky as I have a supportive husband (I know he dosen't understand my bad days, but he trys to be there for me) I wish everyone on here better days and happiness xxx

  • My ANA's have often come back negative when I've been in full flare mode so doesn't necessarily mean u don't have lupus. ANA's change depending on other factors. I was diagnosed over 18 years ago and sometimes mine is positive, sometimes negative.

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