Will you tell your coworkers or friends you have SLE (Lupus)? Or just keep it as a secret?

Question

Hi, everyone, I am living in Taiwan. I am the gril with SLE(Lupus) which is an unfamiliar disease to the general public. Some of our group feel shamed for having it because the elder people told them that they have SLE due to having done something bad in previous life. So, I am just curious about that will you tell your friends or coworkers if you have SLE? Why yes, or no? Thanks.

In Taiwan, we have a religion similar to Bubbhism called Taoism. Taoism believes that everyone has many different lives, past live, present live etc; what you do in this life would link to or influence your next life and so on. Well, it can’t be denied that Taoism does have a positive notion, telling people always be a good person, or you will get punishment next life. Actually, it is a good advice for life, but when you become the ‘example’ of punishment, you really get confused…. What did I done in past life? Can SLE make it up? ….
Well, don’t worry about me, I won’t take it seriously anymore. Now I know it’s up to the different way of thinking, you guys really give me a lot thoughts and confidence. Which answer is the best? Wow, you’ve got me ….

Answer 1

Hi Debby, first of all I am sorry that you have been diagnosed with this condition, and also that you feel unable to share this due to societal beliefs.

I see no reason why you should not be able to conceal your illness. An ex colleague of mine had this condition and I worked with her for nearly two years before she revealed her condition. I was surprised that despite me having similar symptoms and also having trained as a nurse I had never suspected a thing. When I told her this she explained that when she had an off day she simply kept herself to herself and waited until she got home to flake out. On the days when she was really bad she had rang in sick, but as this was only ever for a couple of days, nobody had any reason to suspect she was chronically ill.

However your ability to hide your condition also depends on the severity of your symptoms, and also the type of job you do. I suspect that if you were to have a longthy bout of severe pain or fatigue you would find it very difficult to carry on as normal, particularly if you have a physically demanding job. I say this because I have spent the past two years trying to conceal the fact that I have Fibromyalgia, as I didn't want to be seen as a hypochondriac, or as wanting special treatment. I was also worried about not being able to find a job, if my illness was seen as having had a significant impact on my ability to carry out my duties.

However I now realise that I did not do myself any favours, because the stress of trying to carry on as normal has led to me now having to go on sick due to an exacerbation of my symptoms combined with a severe skin condition (more than likely stress related). I have also realised that I need my friends and colleagues to know as recieving support and knowing you are not alone is really important.

I understand that you may feel ashamed of your illness but you have the opportunity to show people that the stigma associated with youir condition is inaccurate and unnecessary. In many developing countries TB is regarded as a shameful condition and people have avoided treatment as they are too afraid of the shame it would bring to the family. I appreciate that this is a different condition entirely and that your culture probably differs also. However what i am trying to say is stigmas are not helpful to anyone, and by raising awareness you have the opportunity to improve the life of yourself and others. Many countries with high rates of TB have now acknowledged this and developed educational programmes and support groups. As a result case detection and subsequent cure rates are slowly improving.

I am not suggesting you go to these extremes but you could consider doing something similar. When my son was diagnosed with Autism we faced doubt from people who didn't believe in or understand his condition. We also feared that people would think it was due to bad parenting. As a result we decided to print off imformation leaflets and give them to friends and family. This was really helpful particularly as Autism is a difficult condition to describe. Doing this may help you, you may also be able to find support groups in your area, or online forums which may help you to become more aware of your condition and confident in talking about it and dispelling peoples misconceptions.

I hope you find some of this useful, even if it may not seem entirely relevant. Good luck.

Answer 2

Hi. It's a great shame that you have this pressure - I have a relative with this disease in the UK, and even here whilst there are not taboos about previous lives, it is generally not well understood. There is plenty of advice and information available on the web about this disease - make sure you are getting advice from an appropriate rheumatologist and taking steroids. Each country and culture has its own prejudices - on balance, I have gone through life finding that it pays to keep your life private to yourself - particularly with co-workers. True friends should know and not judge against incorrect standards - but even in the UK where there are extensive laws preventing discrimination on the basis of disability, you will still tend to find that the base part of human nature in co-workers will be to use it against you - don't put yourself in that position - it is wiser to be private, and confide in truly trusted friends - keep a professional face or mask for the outside world, then no-one can harm you. By the way, I must say that SLE is a very common disease, particularly amongst women, and it is very disappointing to see superstition and rumour being believed over medical fact. However, we have to be realistic about the world that we live in, so make sure that you take good care of yourself, look after yourself first and ignore the ignorance of others.

Answer 3

Lupus is a culimination of diseases that attack the auto immune system. And has absolutley nothing to do with having done something wrong in a previous life. There is no cure for this afflication (well not at present) though a victim of this disease will
be on medication.

The way that I understand your situation is you are surrounded by supersition and fear of the unknown. And that it may well be best to keep it from your co-workers. As for your friends well you must decided whether they are real friends or not before you confide in them.

Best wishes to you dear.

Answer 4

Well, I have Lupus and APS. It is nothing that I hide and I have never been told this was something that I got for something I did in a past life...but I am also in the US so our customs are different.

I don't tell everyone. Only ones that need to know or seriously care. Close friends, family and possibly employer depending on what is going on. I have had a former employer tell me it was a convenient illness.

Answer 5

That is a decision that you have to make based on what you think the response will be from those you tell and how it could affect your life.
Lupus is not infectious so there is no risk of them catching anything, and new research shows that a diet very heavy in fish oils can actually bring some forms under control.

Answer 6

b4 u tell others about your health you must think how are they going to handle you.People have different feelings,some may laugh-cry-gossip or pity you.And remember its reality you will meet all these people and they will not hide what they feel so you have to b prepared to hold on it.So if l was you l would zip my mouth bcoz it will just add stress in your life as they wont help you with anything.You'd rather go for counselling than telling people.

Answer 7

I don't think it's something to be ashamed of but, then again I also don't believe in that reincarnation stuff. I'm not really sure why you would want to tell others though but, if you feel the need sure, go ahead.

Answer 8

Listen to me Debby,I have lupus and its nothing to be ashamed of!all it is,is your body producesto many white cells and not anuff red cells!Thats nothing to be a shamed of!And those old poeple are Fucked!I let everybody I know i have it,so they can understand when i,m not feeling good!It is NOTHING TO FEEL ASHAMED ABOUT!YOU DID NOTHING WRONG

Answer 9

of course it's nothing to be ashamed of n of course i'd tell them, so that if u were taken ill they'd know how to deal with it. it's just another disease after all. nothing to do with a previous life,thats superstition.

Answer 10

I would tell my friends, its not something to be ashamed of, and if no one understands what this disease is, then explain it to them so that they will understand, the more support you have the better off you will be. good luck