By not telling the truth are you lying to them or trying to deceive/manipulate them in some way?
Lupus isn't menial, it isn't going away, it can't be cut out like some cancers or easily controlled by a couple of pills and the worse thing is you can't predict a flare, it can also be life threatening.
Your thoughts, there's no right or wrong answer I don't think. Let your conscience be your guide - just what does Jiminey Cricket say to you? :-)
Good morning Guildford, thought about this question myself quite a bit, my policy is always honesty is best, sometimes we need to be cautious with timings , but definitely no fibs,they only trip you up another day,and hey if we don't tell these people,how can we expect their support? Great thought provoking Guildford . Happy Sunday x
Thanks for commenting. HONESTY IS THE BEST POLICY is my philosophy really too. I was a bad fibber at the best of times but now throwing brain fog into the mix I'm useless. Remembering what not to say is hard.lol. :-)
Most of us will see the reasoning around this "food for thought" question and the quandry that many of us find ourselves in, and many thanks to Guildford for raising it.
Withholding information is probably considered to be a form of deceit, and dishonesty which all falls into the same category as lying. Think that that being open with a potential partner about things is probably the most respectful thing we can do, and anyone truly decent will not be scared off without finding out more.
Not telling a potential employer however, could turn out to be quite serious, and many companies have a proviso on their application form about withholding relevant facts. Some potential employers warn that withholding facts about health in particular can result in your instant dismissal, if later proven to have been known on application. Depends on the employer. Also think eventually there will come a time when the illness reveals itself during the course of employment, as it is not easy to hide, so think honesty really is the best policy. Having said all that, if there was a fab new partner, and I was desperate not to jeopardise things, I would have to think really hard about whether or more likely when, to tell them and just hope I would be able to do the right thing.
Thank you for taking the time to comment, it is very well put. With regard to employers, though we may have to disclose on application for a job, do we have to when we're already in a job too? Just curious. A job centre employee told me 5 years ago said that I should state I have a disability, especially with government institutions as they're always looking to fill there quota, so having lupus make actually work in our favour in some places. Maybe before interviews people should look up the company's employee disability requirement. I'll try to remember that should I need to look for work. Thanks again. :-)
I'm of the opinion that honesty is usually the best policy however having said that in doing so we need to trust that the person/company we tell acts like a human being and has compassion rather than seeing ways to get rid of you. Big leap of faith to trust the human race sometimes!
I have told my employer after 5 weeks off that I am suffering with lupus and touch wood they have been ok so far. I do feel pressure to prove to them that I'm still up to the job to reassure them that I am not someone who takes time off lightly but we will see as time goes on. I have told only a few close friends and family so far and reactions have been good albeit with some nodding their heads and pretending to understand when they haven't even heard of it lol xx
Thanks to you too. It's difficult one isn't it as self preservation is our number one instinct. I remember over compensating in my job when I was first diagnosed - making up all my time off for appointments and treatment, no wonder there were days where I stayed at work an extra hour or so after I'd finished just to get the energy up to travel the hour and a half home. Then I'd go virtually straight to bed along with the children. What a life. Good luck to you. :-):-)
I do think that not telling someone significant something significant is lying.
However telling the truth has wrecked my life so thoroughly (or was that lupus???) that I am now trying to practice being selective, if not economical, with the truth on certain occasions.
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Sorry to hear that Maggie. Being selective about anything in life is a good way to be. I know that I've avoided telling people in the past but I've also used my lupus to get a bit of extra sympathy and help when needed. I'm on benefits so I've noticed how attitudes change when I say I don't work due to lupus as many people still see people living on benefits as skivers, myself included to some extent seeing as I know of a few. Take care :-)
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The other thing is that (from observation) other people lie all the time, especially in CVs and job applications. In fact - it is almost expected!
I dont know how anyone could keep lupus from others?I want others to know i am the way i am because of a vile disease ,unless your one of the lucky ones with extremly mild lupus how could you not let it show?im desperate to work after having to give my career up,but who would employ a person who is off sick every five mins??ive been searching for a job that woulod suit my current state of health ,its impossible ,so honesty is the best policy.
Lol, I used to want to wear a badge saying 'I'm really not an idiot, I have lupus' with all the word searching and brain fog. I've found a part of myself again in being able to write things down, I'm much more eloquent and it allows time to think. I'm in the same situation as you, would love to work but who would have me, I can't even commit to a day out with my children. Take care :-)
I would tell employer but face to face not on CV.I don't really know when I'd tell new boyfriend think I would follow my instinct but I guess wouldn't really know u til I was in that situation.like maggieS I too have been hurt by telling truth I'm bit more wary now (not illness related) good luck Guildford x
To an employer - straight out with it. Theres never a good time to tell a new partner so I usually tell them on the first date... funny, since doing that there are no 2nd dates unless I land up with another nutter whos life ambition is suddenly to FIX ME.
Oh I'm sorry to hear that. I've had 7 first dates since last June and I've told them all but just because it came up in conversation. I've been very matter of fact about it but as I've also made it clear from the start that I'm not looking for marriage or to live with someone, they've all wanted a second date. I just want to date, go out have a nice time and be me again and not a wife or mother. My illness like my children is mine and I don't want them to have much to do with either. Maybe you should hold back till the third date, as according to the movie Hitch with Will Smith, the 3rd date is the most important as the first kiss date (?). Wish you luck on your next date.xx
LOL!! TBH I seem to attract the ones whove been in long term relationships, broke up & back living at mum n dads & are looking to move in asap!!! HORROR. I am not interested in anything like that!!!! (Cue hibernation mode!)
I have to learn to appear disinterested in what they say too cos polite interest seems to be being misinterpreted as flirting. lol
Remember you have to kiss a lot of frogs to find your prince/ss, lol. Don't hibernate just don't take it seriously, it is the dating game, don't you know? Lol, have fun with it, we have so little chance for that with lupus. I don't date anyone who doesn't have their own space, doesn't have to be owned, as I definitely don't want them jumping into mine, like you. Are you on dating sites? Xx
hi there my daughter is seventeen and was diagnosed a year ago during that time she applied for a sat job with a well known high street store. she did not tell them at the interview but did declare it on her health form which I don't think they read. she became very poorly in November with her kidneys and took three Saturday s off in a row on return to work she was called into see the manager who proceeded to tell her she maybe facing a disciplinary however she told him that she had this bloody awful illness and that she had declared it on her health form. he completely changed his track and said that he would never have known as she works so hard when there. he was astounded and has since been nothing but supportive and if she goes sick no questions are asked. We are very relived that she declared it on her form so I would say be honest, you don't need to shout it from the rooftops but it could backfire if you don't declare things in the workplace.
You cannot be fired if you declare your diagnosis of lupus as a disability. If you have a new job and you do not declare at the start that you have a disability they cannot sack you after finding out later. They have to do all they can to make it easy for you to work.
I was diagnosed in 2006 after starting two days of starting a new job but I choose not to say anything and I did my job to the best of my ability. However in the Spring of 07 I became very ill, again I said nothing. I got an earlier appointment with the consultant, I was kept in hospital and when I rang my manager to say I was in hospital she was shocked as I said nothing to her when I was at work earlier.
I actually never went back to work since that day and I decided to have my pension because of ill health.
All the best to everyone who is going through the dilemma of when to speak out and when to be quiet about their diagnosis
i started my job way back in 1999 and was in good health until spring 05,i was signed off (certs were for 3month periods at a time) for 15 months. i asked to see my manager and the H.R lady for a meeting before i returned to work. i told them i have lupus and gave basic info about how it effects me daily.
since then managers have come and gone and now im battling to PROVE im worth more hours as one manager can see i work hard and use my initative where the other manager says i might become unreliable and it would be a waste of man power.
i didnt know lupus is classed as a diability at work though?
they have been good as i can no longer lift 25kg spud sacks so i can ask for help or banana boxes either. i no longer work on tills as my fatigue worsened as concertration zapped my energy and i was reported for being DRUNK as my speech was slurred.
how can i prove im worth keeping as we are finaciallly in the poop and im not entitled to benifit help.....sorry gotten side tracked,cant sleep through stress of everything x
The only advice I can give is going to Citizens Advice who are excellent. Twice they've made my ex husband's employers pay attention just by getting them involved. He hurt his back on the job but it wasn't reported in the accident book at the time. Best call for an appointment in advance.though as they get very busy. There might be a government disability advice line as there are definitely people you can contact to help you back into work. Lupus UK might be able to direct you. Sorry I can't be more help. All the best xx
I believe honesty is the best policy. However, there are some grey areas. I applied for an internal vacancy but the form asked whether you "considered yourself to be disabled". Thought that was a odd question because the law classified people with lupus as disabled, but I don't consider myself as disabled. The question is how do you answer such a subjective question....?
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Sorry, I replied to you as a comment, further down the page. Either a senile or lupus slip, lol. I'm only 48 but still could be either. :-)
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It's late hun so making mistakes. Riverbird seems to know their stuff re legalities check out their comments. nite xxx
A very interesting question on a something I think about a lot. I will be graduating from university in a couple of months and do not have a definitive diagnosis of lupus. This leaves me wondering if I need to mention it on application forms? I worry all the time that I am never going to find a job because of this illness!! As for the partner thing, I think honesty is best here, and as someone else said, if they are genuine then the illness should not scare them off. I fell ill about 2 months into my relationship and it has been hard but my partner has stuck by me Xxx
Hi, now some people may say I'm wrong but without diagnosis you don't have the illness, technically speaking, employers wouldn't expect people to list what they may potentially have otherwise they'd be asking about family history for genetic connections. You could have had a headache for two weeks, would you declare a possible tumour, just to be extreme. We all crave diagnosis but there are freedoms to be enjoyed without it, life insurance, travel insurance, not having to disclaim. I was initially told by a neurologist in 2001 that if he were a betting man, he'd bet that I would develop MS within 5 years. I buried my head and didn't declare that to any employers, or officials. Funnily enough 5.5 years later I was hit by a major flare which put me in hospital and was diagnosed as lupus. Keep it to yourself hun unless its in your favour not to. All the best xxx
Yeh you are right there. Mind with the life insurance, I said I was undergoing tests but did not have a diagnosis, was told they would contact my doctor, which they didnt. They just refused me the insurance!! But I think with finding a job, I will just keep it to myself! Xxx
Oh yes, I forgot I've been asked that question myself and as I'm not registered disabled I've always said no but according to the employment office years ago it would have been in my favour if I'd said yes in order to fill their quota. You need time to research, don't you? The law classifies lupus as disabled?? And yet lupus sufferers have to pay for prescriptions. Are you sure? :-)
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Yeah - I'm new to all the legislation etc. plus maybe my brain fog is kicking in. I meant, the DDA/Equality legislation... Hope i got it right this time
Just for info. might be useful for some, taken from a Disability Skills Website:-
"It is illegal to give false information. Many application forms and medical questionnaires ask direct questions about disability and health. If you give false information and your employer finds out after you start work, you could be liable for dismissal.
You are obliged by law to tell your employer if your disability has any health and safety implications for you or for others."
If you actually become disabled AFTER being employed, then maureenpearl is quite right that the employer cannot then do anything that contradicts the DDA.
There is though, something that can be used as in the following:-
"You can control the way your disability is explained to a prospective employer. There are positive ways of disclosing a disability which can emphasise your skills. For example, rather than telling a prospective employer ‘I have a hearing impairment which has caused me difficulties’, you could say: ‘Because of my hearing impairment, I have developed an excellent ability to concentrate. This enhances my ability to perform complex, detailed tasks such as entering and analysing data on spreadsheets’. Another positive way of disclosing would be: ‘Having a visual impairment means that I developed an interest in and aptitude for Information Technology at an early age. I am keen to develop my IT skills further in my career’.
I am sure that all of us lovely Lupies can find some positives that would help to get us that job in spite of. Take care everyone.
What great info. Why not post it as a blog so all our community gets to see it. Some may already know but it's obvious that quite a few of us don't. Can we get any literature from lupus UK on this stuff? We need a lay mans guide to employment law. Something we can stick under employers noses. I'm ranting now, lol. :-)
As has already been said, some employers (often larger firms, the NHS being one) have policies surrounding equality and diversity, plus discrimination, from which they actually like to have a small "quota" of disabled persons to prove that their organisations do not discriminate! So things not all bad in the employment world. Jobcentre plus also has Disability Employment Advisors (DEA's) to help disabled persons into work or change jobs. Access to them can be arranged at the local jobcentre. I do not know whether that service is as successful as the Disability Ressettlement Officers used to be though. DEA's can give information about various grants available to make adaptations at work possible so the employer does not have to foot the bill.
Great question Guildford! I have come to it rather late on a Sunday evening though. I, like the majority of you here believe that honesty is always the best policy. Certainly in a work situation it is a question of legality and it can stand us in good stead should we still be working in terms of the Equality's Act proctection. As for with a potential partner, isn't it better to know immediately whether someone is willing to accept you with the Lupus rather than have a few dates and maybe develope feelings for someone only to then find out they have difficulties accepting someone with a disability (which is clearly their issue not yours!)
I have thought of another problem, sometimes the issue lies with ourselves, here I clearly speak about myself but I know of others who have experienced similar feelings. Sometimes, actually quite often despite the fact I have been diagnosed since 2004 I find myself denying the fact that I am someone who has Lupus and quite severe Lupus at that. i realise that my behaviour can be very harmful to me and certainly not benefitial in any way but it is I realise a way of coping. Do any of you experience this? I will pretend that I am much better than I am, then cower at home. I can't bear for people to see that I am not really coping - I know it is stupid and not helping me or in fact the Lupus community in the long run.
Hi, I'm still here. My brain is working overtime after a week of being in bed with a lupie cold.I agree with you wholeheartedly and as far as your way of coping with the illness - each to their own. Some people find illness and any difficulties they may have quite personal, preferring to keep things to themselves, to suffer in silence, my sister and a couple of my friends are like that. I'm a bit of an open book and yes a drama queen at times. As long as you don't expect people to be mind readers or feel neglected by friends and family as they haven't offered more support. Do you think they'd be happy to know you 'cower' at home and aren't really coping? Would you if it were a friend or family member of yours? Open up just a little hun to let a few people in, you don't have to cope alone. Take very good care of yourself. Xxx
Hi, good question but personally speaking I would have to say honesty is definitely best when dealing with employers.
I was in a situation where I worked for a care company that was closing (in the office as admin staff as was considered no longer fit to work in the field due to my illness) and was expecting to transfer over to new company as 16h per week admin staff... NOT!
I was transferred over as 16h but as the old company never gave me a new contract (stupidly not considered on my part) but as care staff and my life very quickly became absolute hell. I had a meeting with the new manager before I started the new job to explain about the Lupus and its effects and she told me that it 'would be taken into consideration' and they gave me 16h care initially. Not ideal but i didn't really have a choice. However, as time went on they wanted me to do more hours, some weeks 4, some weeks 40, they were sending me further afield and I was given much more moving and handling (which initially they agreed not to do).
Anyway to cut a long story short they tried EVERYTHING to get rid of me in the end, meetings, threats of disciplinary action, bullying etc. I went to see CAB and it seems that they were doing exactly what i thought, trying to push me out, BECAUSE I informed them before I went to work for them that I was sick and they took me on regardless. Had I not told them they would have been well within their rights to get rid of me for misleading them. As it is I insisted that I was going to leave when my body told me to not them, which I did
The only satisfaction i got in the whole horrible situation was that my body finally gave up on me at one of the busiest times for them, quite honestly how I kept going for as long as I did I don't know, but when I rang in sick that day the absolute horror in the voice of the person at the end of the phone was pure joy for me. Sorry but they deserved it...
Lol, little victories help keep us going. It's peoples ignorance and the profit margin we are fighting. I worked in care, manual handling and lifting when I was healthier, its a tough job both physically and mentally if you do actually care. Well done you for battling through. Hope life is a lot less stressful now. Xxx
Sorry to hear that you have had such a horrid week with the Lupus and thanks so much for your reply. I completely agree with what you say. I can't expect friends and loved ones to be mind readers nor can I expect understanding if I don't tell them or even show them how I feel or what it is like for me, I'm struggling with this situation at the moment. There are a few people I let in but mostly it is also a question of not even wanting to admit it to myself so it is a bit of a dilema - I'm getting there Thanks for listening and for this interesting post/question.
Well I'm always around to chat to, moan to etc. You can message me direct I think, any time. You sort of have to go through the grieving process with any chronic illness, the person we've list is the one we used to be. There are four stages - anger, denial, grief, acceptance - something like that. You can ask to be referred to a counsellor. Just let the right people know, the ones who can help you. Xxxx
The issue is that if you open up to someone they DO see the affliction first and not necessarily the person. That applies to just about anyone. Partners, friends, employers, insurance companies etc. The list is endless.
The only way you can ensure you are not treated differently is not to tell.
That obviously presents a different set of problems.
Thanks for commenting but I have to say I don't necessarily agree with DO. For me it's they MIGHT see it first and then for quite a few of them they tend to forget if we look 'normal', which is one of our problems as we then don't get the support. That's just my opinion but I'm sorry if everyone in your life sees the illness before anything else, that must be equally difficult for you. Take care xxx
The condition is hidden, yes. But making people aware makes them often view you as a sick person first and anything else secondary to that.
If meeting or chatting to a person for the first time you will probably both find the situation easier if no afflictions are mentioned. Once they do enter the frame there is often a drawing back.
But I also concur with you that having an illness that is not always visible brings its own issues.
It perhaps helps to fuel the redtop brigade who like to see people such as us as some sort of medical fraud. Truth is we are only out and about when we are having a better day, and they dont see us the day after or before. But experts can be found on all street corners. I know many myself.
I agree and disagree. I believe in full disclosure. But... Sometimes, from my own experiences, it is hard to deal with yourself, and come to grips with, so telling someone else makes the struggle greater. If it is not going to be a permanent relationship, I say nothing. Otherwise, I speak on a need to know basis. Basically, why should I decide to tell something that most people see as a mental issue to get out of doing stuff. I have become increasingly leery about what I tell, and who I tell, and share my condition with.
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