How forthcoming about having lupus and the toll it's taking should we be with our employers?

I run a daycare out of my home and absolutely love it. However,.St the end of the day,I am worn out. My weekends are spent trying to recovery from the work week. Several of my clients have invited me to family functions, dinner, etc and I almost always decline. I don’t want them to be offended, but I’m not sure if I should tell them that I’m really worn out due to this disease. I don’t want them to think I can not provide proper care for their kids. Any suggestions?


I think it speaks volumes that the families invite you! After a long day, you still have things to do at home, and I think people think that since you work from home you can do your housecleaning and whatever during the day. But you are working full time taking care of the kids....

I don't think you should have to bring up Lupus, you just need your down time.

I have my own business and a part time job. I haven’t told anyone connected to my work about lupus and I don’t think I will unless it gets so bad I have to quit. I don’t want anyone to think less of me or think I cant do the job because of lupus. Like you I don’t always participate in other activities because of it but I make other excuses, it’s ok to just be worn out at the end of the day, it happens to everyone. Personally it makes me feel stronger if I acknowledge the condition as little as possible. I just want to be me, not someone known as a sick woman or a “victim” of this rotten condition. That’s just my viewpoint. Best of luck to you!

Jane, I agree with you about acknowledging it as little as possible and that it makes you stronger. I do the exact same thing, so that I remain productive in all aspects of my life. I did find it necessary to confide in family because it would affect me not always being at gatherings when feeling extremely bad through flares and not wanting to offend family. My condition turned worse and I quit my stressful credit union job and opened a small business.

Carrie, IMHO I don’t think it’s necessary to explain your condition to them. It sounds like they want to establish a personal relationship outside of the business. They like you and its a compliment and speaks to your level of caring for their children. Maybe you could organize something on your terms. Have everybody bring something for a gathering and you can choose what you’ll do and when. Maybe at the end of the work week when they will be their to pick their children up. prepping and organizing everything ahead of time will save you on energy and stress. I had 20 + people over for last Christmas and found that to be SO TRUE!!!
Best of luck!!!

GREAT QUESTION! I’m wondering the same about a graduate school program… I want to arrange flexibility and backups in case of flares, plus extra resources to pay for it, but don’t want to make them think they made a mistake accepting me or that I won’t make it. Plus, with classmates, where is the line between explaining why I’ll be wearing a sun hat in class (fluorescent lights) and often rigid about meeting schedules for group work, without sounding like I’m complaining… Looking forward to hearing responses, and I think Ann A.‘s previous perspective about simply stating what you need AND what you can do, without tons of explanation.

While totally respecting that each person has a different best way of processing and knows themself best, I’d like to offer a different perspective from what others have shared. For myself, think hiding it makes me feel like an isolated pariah where nobody will ever understand how hard I really work even though I may not get as far as someone for whom it came easier… Plus, I believe speaking out makes for a more accepting world for all of us. Although I don’t hold any contempt or criticism for others’ preference for privacy, I see the general policy of hush-hush as all the more reason for me to be outspoken, even anonymously if need be.

Key concept for sharing successfully: disclose carefully, in the appropriate circumstances, and in the right WAY. It must be safe for you to do so, and you must do so in a way that increases positive thoughts (by others and yourself) about you and the illness you happen to “have”, aka kick the a$$ of on a regular basis and get back up from when it knocks you down!

Something really positive and reassuring, even flattering, will certainly come off better than a regretful or ashamed decline. If seems to be in reading your attitude itself that people judge whether you are handling it and overcoming “impressively” or whether you are falling behind and stuck in self pity. (It’s just here on LWL, and I’m increasingly convinced ONLY here, that we can share those honest feelings of frustration, confusion, failure, anxiety, and even despair… And then be recognized for the sheer BRAVERY it takes to face and express those things!) People who are relatively free of suffering can’t ever understand it, and instead like a quaint empowerment story, even on a small scale. An example of what I would mean is as follows: you could try something like “I’d love to, but with limited energy from [this condition] or [other excuse], I want to save it for the kids when they come brighten my weekdays!” Remember that the storyline and delivery matter a lot more than the label, and if you’re worried about the label sticking wrong, you can simply leave it out and instead describe your experience! Or at least the flattery of saying you delight in spending your limited energy with their little ones. Make sure it is coming from an honest place, even if details and names have been omitted for privacy :wink:

Based on how much they seem to value your work (good point, Trisha!), I would guess they are wondering how they were lucky enough to land such a superwoman for their childcare… Describing how an in-home job such as the one you’ve created is most supportive to your condition AND don’t leave out that it’s a way you feel you can BEST contribute your talents most effectively/without barriers/etc. If you’re worried about being reviewed like a job interview all over again, just stick to those principles of always including the positives and highlighting your successes or what you like in a job.

I am convinced that talking this way to others, only if sourced honestly and not a totally fake front, greatly aids our self-talk, self-image, and sense of life satisfaction! It’s so essential to be able to rant about the challenges and be understood (LWL has our backs on this!), but cultivating an infectious sense of making not only the most of life but something unique, new or better out of it benefits us ourselves at least as much as it makes us well-received. Tread cautiously, but if and when revealing, shine plenty of positive light on it!

Another key thing to keep in mind, always, is that some people will judge you out of their own fear and intolerance no matter how positive or impressive you may be. In this sense, the conservative method of not sharing can benefit you even if you are the talking type like me. I find it safe to talk about lupus, but I stay VERY quiet about my other lifelong serious illness: bipolar disorder. When stigma runs high, I believe it must be fought, but in case of risk to your own success or well-being, winning your internal fight of acceptance is certainly enough. I plan to write a book about my experiences and views on how we (lupus patients, psychiatric patients, etc.) overcome not only our diseases but the unhealthy culture of rejection, competition, and productivity-defined value for life that ALL westerners suffer from, how self-care and self-acceptance benefit everyone, and etc. etc. Yet I will be waiting until I am well-established and have proven there is nothing to fear or doubt about my capabilities. Then you knock their socks off with what motivation and intense effort REALLY underlied the whole process.

To me, based on their interest in knowing you, they’re ready to be impressed instead of critical. But it’s up to your best judgment, and be mindful that one squeaky wheel out of the bunch can cause a lot of distress for you even if the others remain supportive. Best of luck, and no matter which way any of you deal with the issue of sharing, acknowledging, and handling your illness(es), do so remembering you are a CHAMP!


I have found that honesty is the best way to approach this issue.

There are things that we can do and others we can’t, and when that happens a least others know what is wrong. I tried to hide my illness for many years and I feel that was harder on my stress level then when I finally opened up and spoke the truth. Although some people didn’t understand the disease they can understand the effects of it. And if they can’t that is their problem not yours. Life is too short and us with lupus have enough to worry about!

As far as failure goes well that is a hard one! I had never failed at anything that I set my mind on and then one day I woke up and the dream job that I waited my whole life for was gone! Which I landed four months earlier! Yes it was because of the lupus! I failed myself and my family! But I had to find a way out of my world spinning out of control because it wasn’t healthily for me, so i took a leap of faith and I turned to the man above and said that he knew my plan in life and I had to trust in him!

A year ago in February is when my world came to an end as I knew it. It took some getting use to, but now I couldn’t be happier! My flares are better under control and my family has a better understanding of my disease.

So I am speaking from experience when I say the truth is the best way, it makes everyone better for it…Deenie

I work in retail and felt the same way. I didn't want to tell anyone that I have lupus. Unfortunately, I was forced to because I am no longer able to do the things I used to do with no problem. Recently, the company I work for thought it would be a good idea to force the employees to work ten hour days four days a week. Well, I tried. I ended up calling out sick three times because I would pick up every virus that came into the store. I told my employer that I couldn't do ten hour days, and was told that because of my limited schedule, I may loose hours. Of course if I loose hours I loose healthcare. long story short, I had to tell them that I physically could not do work those hours and explained that I had lupus. They have been more understanding. I now work four nine hour days and one four hour day. I found that lupus is such an unknown to so many, the only people I have discovered understand that I'm not faking it, are those that have lupus.

Hi!, just say to them that you will try to make it depending how you are feeling after you have settled down from your day. Yes , they might not understand but if they know about your Lupus! , they will understand. It was hard for myself and my family /friends to understand that at the start of the first year but as time went on they understood that my health just would not allow me to attend some of the events all the time. It is hard to make up things (lie) to those who cares about you! So just let them know if you are able after you settle down from your day . Don’t Stress it will be okay !!..Beverly L.

I just decided to take a sick leave and feel like such a failure. I am giving my job all of my energy and I am missing so many days sick and leaving early I just can't keep up with it and at the same time I have no energy for my family and end up in bed by 6 or 7pm every day. I kept thinking if I ignored it and pushed through I would be ok but I just can't go on like this anymore. I have started Benlysta and am hoping it will work and I will be able to go back but it takes months to work and it does not work well for everyone.

I'm clergy, so I guess for me its different. I have told people in my congregation that I have lupus (well, just my executive board, thinking it would be kept confidential-- and it wasn't). People need to know why when I visit them in the hospital I may be wearing a mask, or why I can't work 80+ hours a week. They really want me to stay, so they are willing to accomodate. I can work from home at times, and will soon have 1 Saturday off per month. Perhaps if I didn't mention the illness, I could have negotiated these things, but being clergy isn't a job its a lifestyle. I'm not strong enough to take care of others all the time while maintaining a lie that I am healthy. Also, by mentioning it people with chronic illnesses may come out of the woodwork, wanting to connect.