Monday, 28 September 2009

Is it lupus who is the master of disguise, or is it me?

On recent occasions I have met up with friends I haven’t seen in a while and certain questions and remarks they made showed that they clearly don’t have a clue about how much lupus plays a part in our lives these days and the impact it has had on us. For example, it was flippantly implied that my having largely given up most my paid work for the time being was some kind of indulgence (something I’d like to go into in more detail in a later post). Although I was momentarily irritated as they’d hit a very raw nerve, I quickly realized that any insensitivity was entirely unintentional and most importantly, that I was at least in part to blame for their misunderstanding.

When I thought about it I realised that although friends and family have been told of bouts of illness, periods of hospitalization and we’ve been open and honest about the complications all this has brought to our lives, it really just amounts to ‘hearsay’ as only very few have witnessed evidence of it for themselves. In fact on the whole most of them have only seen me looking and acting well. When I meet face-to-face with others I find myself always doing my best to present myself as positively as possible both in temperament and appearance. Even when the lupus is trying to deny me and energy is running low I often find I just ‘dig deep’ and carry on regardless. So it’s really no wonder people have the wrong impression.

This led me to question whether it is just a façade and to ask, am I somehow being dishonest and just putting on a show for the outside world? Could it be that I have been using a ‘disguise’ of wellness and positivity to fool others and hide from the reality, in a similar way to which the lupus itself disguises itself as other illnesses to conceal its’ real identity?

After much thought I am glad to say I don’t think this is the case. I realised that it’s not that I’m being false or deceitful, quite the reverse: it is just part of me to be sociable and friendly. As those the closest to me would vouch, by nature I am generally a relatively cheery person who, within the boundaries of realism and honesty adopts a positive outlook. It is the way I find my way through life. Tony my husband is very much the same. So during times that I am ‘out and about’ talking to others and being part of the world what they see is not the lupus but just me being me and being so is interpreted as ‘healthy’ by others. Equally, perfectly healthy people who are negative and unengaged can seem unhealthy. So I suppose it is unsurprising that others can easily fail to appreciate some of the ongoing challenges and wretchedness that the lupus bring to life when it so chooses (and on a more frequent basis than many imagine) as these things are not visible.

As being the way I am requires a good level of energy, I have often surprised myself how I have managed to carry on ‘being me’ without it being obvious to others. Even when I am in hospital I manage to chat and befriend the nurses and cleaners I meet and I am sure they wonder what on earth I am doing there. I have even driven myself through high profile presentations for work which I’ve done successfully without anyone suspecting anything untoward only to find myself shortly after.

It is only in the very worst times that this ability to ‘shine on’ regardless has been affected. For me those rare occasions where I felt lupus had robed me of my personality were the most desperate and frightening. Only my very nearest and dearest have witnessed this as I retreat from the world.

So on reflection in some ways I am glad that others don’t get it. I want to be me and I am glad that I still can, even with the omnipresence of the lupus and all its many faces.


Giverny said...

Hi there, this article just put into words exactly how I feel at the moment. I have a friend who is really stressed and keeps comparing her stress to my illness. It made me so angry because i NEVER mention my illness to my friends, and i never moan even when i'm in agony. Yet then i realised she can't help it because as far as she knows, i'm not that ill. But that initial rage is so hard to control hehe!!

Daisy Seale-Barnes said...


Thanks for commenting - I am just so glad someone understands what I'm talking about. Having your lupus compared to 'stress' must be especially infuriating!

It is only since I've rationalised it that I see it's not really fair to blame others, but quite honestly at the time it's sometimes enough to make my blood boil!

Poodle Soup said...

I been one of those people who didnt understand Lupus, my sister had it for 17 years before I was diagnosed. Shortly after I was diagnosed my heart came crashing down on me, the guilt and lack of understanding all of these years towards her - I finally realized what my sister had endured for so long. Now Im much better with it all, am closer with my sister and understand her more now as I am going through it myself. I no longer feel guilty but am a bit more compassionate for those not in the "Lupus Know" one will ever fully understand our disease and what we go through, but some try and thats to be appreciated :)
Thanks for your post Daisy...always a pleasure to read!

Anonymous said...

Daisy hi

I just wanted to say that your blogs are always such a pleasure to read. You are a real credit to the lupus community.

Well done and thank you.

Daisy Seale-Barnes said...

Thanks, that is very kind of you to say - I'm really glad you like it!


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