View Full Version : "coming out" about Lupus

08-28-2013, 10:57 AM
I worked in a few different jobs since being diagnosed with Lupus. It's never been an issue until now. People I work with (including the boss) know I have Lupus. Nobody has made a big deal about it. Especially me. Any accomodations or modifications I've needed to do my job as effectively as possible, I've made myself. I've never asked for any "reasonable accomodations" nor have I used Lupus as a crutch or excuse. Every single person who works in my office has some type of physical or emotional issue. Life happens. Life goes on.

Enter the Service Dog debaucle. Until I am out and about with a service dog, I can blend in, I can remain anonymous and I like it that way. Having a service dog with me is like wearing neon. I'm not thrilled about it, but it is what it is. Suddenly at work, I'm now under a microscope. Every move I make is being scrutinized. "Persecuted" is more like it. I WORK FOR A CENTER FOR INDEPENDENT LIVING of all people, THEY should be the most understanding but yet, I find the opposite. Suddenly everyone thinks they have the right to tell me how I should be handling my health. I'm getting the stories about other people they know that has lupus and so that makes them an expert. I get questioned about how I'm handling my lupus. Nobody else gets the third degree like I do. I have a boss who thinks he can tell me how I can and cannot take care of myself. Yeah, I'm building a folder about that. I feel like I'm constantly having to defend myself!

I'm not a whiner. More of a martyr than anything. I don't advertise, talk, brag or whine about my health. I'm often seen sitting at my desk drinking weird concoctions (I like to make green drinks) and eating "weird food" (organic, not fast food HOW DARE I!) I keep to myself as much as possible and don't participate in the office gossip. Yet, I'm often the topic of many conversations and it is getting very old!!!

So yes, I'm looking for a different job. Preferably with a mature group of individuals! I'm sick and tire of having to defend myself all the time.

08-28-2013, 11:42 AM
You are right, it is quite hypocritical that you work at an Independent Living facility and they cannot seem to be supportive or understanding about your illness. I wish you the best of luck in finding new employment. In the meantime, since they feel that they have a right to tell you how to treat your disease, you might think about now being upfront and "in your face" about it. In other words, start demanding accommodation for your illness, start demanding that they make changes to your workspace (like replacing the fluorescent lights), start demanding that they allow you rest periods. In other words; beat them to death with your Lupus and whip them into shape. Bring in literature about the disease and leave it where they can read it and learn (include The Spoon Theory). Educate them weather they like it or not!
There is no need for you to be a martyr - perhaps you can be a Lupus advocate instead!

Of course, these are merely suggestions. You must do only what you are comfortable with. Personally, what I have suggested to you is exactly what I had to do at my place of employment. So, while they didn't like it at first, the more they learned and the more they understood, the more supportive and accommodating they became and the resentment by them and by me lessened remarkably!

I wish you the very best, whatever you decide to do.

Peace and Blessings

08-28-2013, 03:45 PM
UGH! SO WRONG Ruziska! SO SORRY! As I always say, "you cant "get it" unless you GET IT"... Saysusie gave GOOD advice! KILL them with LITERATURE about WHAT YOU LIVE EVERY DAY of YOUR LIFE!!!! GOOD LUCK and IM THINKING of YOU!

08-29-2013, 04:12 AM
the stupidity of narrow minded people will never change !!!!! therefore until you can get people to open there eyes ..... they will never see any problem differently.

08-29-2013, 05:42 AM
If only there was a 'walk-in-my-shoes-for-day jab'!

08-29-2013, 05:44 AM
The 'jab' is important...it would help me to stab 'em with a needle.

*sure that makes me sound like a lovely person?!*


08-29-2013, 09:29 AM

I am so sorry you have to deal with this at your workplace! They should be ashamed of themselves for acting this way. They are supposed to be advocates for you, not discriminating against you. I agree with what Saysusie suggest. That sounds like a great course of action to take. I have been reading your post about your service dog, how is he/she doing?

Please keep us posted as to what happens.

08-29-2013, 10:01 AM
Thanks Creekbank. Karma is growing like a weed! I've got an exceptionally smart dog (I may be biased). Right now we are working on housebreaking and bonding, both going better than I could have ever imagined. I'm reading everything I can get my hands on regarding service dog training and dog training in general and can't wait for the day we make our public debut as a team. I've got his service bandana ready for him and when he's full grown, I'll get him a backpack with the proper patches on it. I've found he responds best to whistles so I'll be incorporating that into his training command vocabulary. The best way to teach him is through play and treat rewards. I got a laser pointer that he loves to chase. I'll be using the pointer to shine on the object I need him to retrieve. He picks up commands quickly and has already learned "no kitty" as in no, you cannot chew on the cat. However, the cats REFUSE to learn "no dog" and constantly harrass him and my beagle. The cats will literally walk up to Karma as he is happily minding his own business gnawing on a chew toy and try to take it away from him. For the moment, one of the cats outweighs him by a few pounds but that won't last long. He gains an average of 2- 2/12 pounds per week which is spot on for a labrador retriever.

08-29-2013, 11:45 AM

08-29-2013, 01:25 PM
If only there was a 'walk-in-my-shoes-for-day jab'!

I tell people something like that 'try walking a day in my shoes....but you wouldn't even make it 10 steps because you will be in so much pain'. Too bad there wasn't a body switch type button we could use.

08-29-2013, 02:24 PM
Pardon my rudeness BUT, I seriously want to wear a tshirt that reads: "I bet they find a cure for my Lupus before they find a cure for your stupidity"

08-29-2013, 03:18 PM
Through my life's obstacles including Lupus I find it easier to understand why they don't understand Lupus, it's symptoms and etc. instead of trying to get them to understand what I am going through. I am all for being advocate but not defending this thing called Lupus who has altered me. It is like saying I am not worthy when I defend the disease that took up residency in my body.

Sometimes turning our kaliedscope a bit we can change or reception, perception of what other people's intentions are and be able to relax and not feel like we are in a state of constant defend mode.

I have Lupus, so *^#@! what...Be well...O.

09-05-2013, 02:45 PM
Thank you for your post! I've been dealing with much of what you describe when coming out Lupus within my family and friends. At least with my group I have the thought in the back of my head, at least their comments (no matter how inconsiderate or stupid) are coming from a place of caring. I just don't know if I have the strength to hear, "Oh my Aunt has lupus, and she's fine." right now. I was trying to go through the process of telling those close to me in person, but that has just been too taxing, and made me feel angry. I've been considering writing a note on social media and keeping it private unless invited to view. But I've re-written it 3 times now, and just can't get what I want to say conveyed correctly. One version was just a response to the anger over the other feedback, and it got so long just from me telling them what I didn't need to hear. The second draft left out the negative of what I didn't need to hear, but went way to in depth describing all of my symptoms to try to get them to realize on their own that my fatigue and their fatigue is not the same. The third draft is better at balancing the 2, but still not right, and definately too long, where I think people will tune out, and then I'll have to have an uncomfortable conversation with them anyway...
So, I just wanted to say, good luck, and their are others that feel your pain. However, I'm not sure changing jobs is the answer. Sometimes the devil you know is better than the devil you don't. (I have been let go from my last 2 jobs due to medical issues during a flair. If I had employment where the company was understanding of my illness and needs, but had to put up with the high-school style gossip and ill-fitting advice, I think I could live with that.) I wish you all the best educating the folks you work with!

09-09-2013, 03:31 AM
Oh abbyrition...
Steve B had a great link with a lupus letter to the world. I don't know how to make a link.....let me see if I can find it.....

09-09-2013, 03:38 AM
This might not work!

Is where the letter came from

09-09-2013, 04:18 AM
well done jaynie, the link works. for everyone else. go to the symptoms section of whl. the letter is a sticky on this section.