I’ve never had any intention of hiding lupus. It would to all intents and purposes defeat the object of raising awareness. It’s a topic that regularly sticks its proverbial head out of the window with tongue flapping in the wind and it’s a topic that can be looked at from multiple angles.

  • How do I tell my employer? How much do I tell them?
  • What do I tell my family?
  • How do I explain to my kids I’m not well and it’s all the time?
  • Help! I feel like an hypochondriac!

Part of the problem is that lupus is a disease that rages an all out war inside the body at a microscopic level and, for the most part, has limited external signs.

Last week at work I felt like I was repeating myself on a regular basis. I had been moved from returns to help with dispatch (the idea was that they need people picking) and I found myself telling a DTL that I shouldn’t be picking, who passed me to a Team Lead who then got the shift/ops manager involved. And every day it was a different DTL, TL and Manager. The conversation with each and every one of them (with two exceptions) went along the lines of –

Returns have sent me over to help with dispatch.
Excellent, are you trained on pick?
Yes, but I shouldn’t be picking.
Oh? Why’s that?
I have a disease called Lupus.

Enter Team Lead Stage Left

What’s that?
He says he shouldn’t be picking because he has… (pauses trying to remember what I just said)
And what’s that?
A chronic auto-immune…. (team lead obviously switches off)

Introduce shift manager stage right

This gent has an illness which prevents him from picking.
Oh right, have occupational health said that?
No I’m still waiting to see them.
OK, find a pack bench…

And yet not one of them has walked away with any recognition of the disease I have or what it does to me. I could have come out with incoherent babble and they would have been more informed.

It doesn’t apply to everyone. Some of my colleagues know that I have some form of reaction to light since they see me with my long sleeved tops and my sunglasses on. Some of them also know that I take an awful lot of tablets. But they don’t know the details.

Is it that I don’t have a way of simply explaining an highly complex disease, is the standard explanation too clinical, perhaps I think they don’t really want to know, or maybe I fear they’ll think I’m a hypochondriac.

Sometimes I wish that I could explain, really explain what it is to have Lupus because from the way I see it the only people who can comprehend it is those others who have Lupus too. Perhaps “a day in the life” could be wished upon the real sceptics. I would never wish for someone to have Lupus, but just one day so they could understand that little better…

I can print off fact sheets til I’m blue in the face (or perhaps a reddening across my cheeks) but they can never truly understand what I as a Lupus sufferer go through day to day. If only pain made your skin change to green or nausea make you develop bright purple spots or those subtle twitches developed into a full blown futterwacken then perhaps people would pay a bit more attention.

Why should I have to wait for the day I have a seizure at work or some other cause to have me leave in the back of an ambulance for people to realise that what I’m going through is not some mediocre issue that they think I’m blowing out of all proportion.

If I shut up and get on with it and not tell people at work then I don’t see myself being there by the end of the year but by avoiding the slighlty more physical tasks (such as running round an overly hot series of mezzanine floors) I might just make it that little bit longer.

I know that people at work have access to my blog and I hope that some of them do read it and, on preference, empathise as opposed to judge. I should hope it helps them understand me that little better.

And if you have read this and want to ask me to fill in the gaps don’t hold back because you think you might be being intrusive. I would rather you know.

  1. lupusadventurer says:

    You expressed so well what so many of us lupus patients have thought or felt at one time, or many times, about people at work understanding our unique and invisible health challenges. When I was first diagnosed (what a relief that my disease finally had a name) one of my best friends at work cautioned me, “whatever you do, don’t tell THEM that you have lupus.” She was worried my bosses would not understand. However, not too many years before that, congress had passed the then new Americans with Disabilities Act of 1990, and I disagreed with her and decided to trust by bosses and co-workers with the information. I learned about the responsibility I had to recommend and their obligation to work with me to adopt reasonable accommodations that allowed me to continue to work productively, and it has worked out amazingly well. In 2008, congress adopted some broad revisions, the American with Disabilities Amendment Act, that are even more patient-friendly than the original ADA. Keep talking to your employers about the appropriate needs you have to enable your maximum productivity. Keep at it, and keep working! Great post!

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