Monday, 8 December 2008

Lupus Through the Looking Glass

Getting to grips with the peculiar relationship between lupus and personal appearance

I’d been through the mire. I’d undergone a whole host of hellish treatments. I’d been through the (thus far) lowest, sickest and most desperate time in my otherwise very fortunate life. It was with a dubious sense of somehow being ‘cheated’, and even with a feeling of mild irritation that I received the comment from kind friends and loved-ones trying to offer well-meant consolation, “the funny thing is, you look so well”. After all, weren’t they right? Couldn’t this be a small silver lining?

Another scenario: trying to convince various doctors in the absence of having anything actually physical to show them that I felt bad; that things were definitely ‘not quite right’. I felt I needed something to prove things weren’t in order. This was not helped by the fact that all the tests they were doing confirmed what my appearance suggested: I was right as rain.

As you may well have experienced yourself, with lupus, looks can deceive. The level of ‘butterfly rash’ I get is relatively mild. It has often actually appeared as a rather flattering splatter of ‘rosy blush’ on my cheeks and there is also nothing like a bit of a fever to give me a ‘healthy glow’.

And yet on the other hand, I am as vain as the next man (or woman!) and on the occasions where there is distinct visible evidence of what is happening within, either as a direct result of the lupus or a side-effect of the drugs, I’m mortified!

I can’t help but feel a bit guilty worrying about my appearance in the face of a serious illness, but I was reassured to find I am not alone in this when we did our research. The important interrelationship between mind and body is something I have learnt cannot be overstated and is absolutely vital to Living Well with Lupus. I guess in this context it is important to respect these fears and concerns however trivial they may appear in the wider scheme of things. It is undeniable that things such as losing hair or having a rash on your face can have a huge impact on anyone’s sense of wellbeing and identity.

A funny example of my arguably ridiculous vanity is when I was fresh out of Intensive Care. I had just been moved to another ward and my first request was that Tony should bring in a razor to add to my wash kit. When he did, I got him to  push me in my wheelchair along with the intravenous drug wheelie contraption that was attached to my arm, to the shower cubicle so I could shave my armpits that had had significant opportunity for growth when I’d been ‘out of it’ on life support in Intensive Care. It was an archaic NHS building (since then rebuilt thank heavens!) and unfortunately the faulty shower caused the ward to flood, but at least my armpits were as smooth as a baby’s bum!

The personal appearance miseries that have been inflicted on me by lupus so far include moonface, acne, glowing death-white fingers (and toes), swollen knuckles, a crimson red moustache rash (that I thought would never go), burst veins from too many needles that made me look like a junkie – oh, and some ‘unwanted’ hair growth from those damn steroids - nice! Weight gain (due to Prednisolone) and hair loss are other horrid physical manifestations that all too frequently distress ‘loopies’.

In a similar way that the “but you look so well” comment grates when there are no physical symptoms, there is something slightly irritating when again well-meaning others pretend that they can’t see anything when the visible evidence is right in front of them! Denying it (even if it may seem like a fuss about nothing to them) makes you feel dismissed and unwarranted in your natural worries. On the other hand, making a joke about it is the reserved privilege of my younger brother, who is the only one who can get away with tugging on my ‘moon’ cheeks saying “but it makes you look so cute!

For anyone out there now wondering how the hell they are supposed to respond in a minefield of such sensitivity, I find the approach that both Tony and my good friend Kirsty take is the best. They simply agree that “Yes, that is a nasty rash / moonface (or whatever), I can see why it is making you miserable” but then go on to say something reassuring along the lines of “at least it won’t last forever and it probably appears far worse to you than it does to everyone else”.

So what to do about all this?

As ever, I have found the way forward is acceptance, e.g. ‘OK, I now seem to have a red moustache’ (or whatever it might be) followed by a plan e.g. ‘what am I going to do about it?’ Kicking, screaming and lamenting are all futile (although possibly therapeutic if used in measure and kept brief!) but accepting and tackling the situation is constructive.  Tackling it can often be twofold: emotional as well as practical. Changing your mindset by being realistic, kind to yourself and consciously putting it in perspective is very helpful. As the late Richard Carson put it, try turning your ‘melodrama’ into a ‘mellow-drama’!

Beyond this, practical measures are called for. I plan to write in more detail about particular individual beauty issues at a later point (my personal beauty tips mainly revolve around dealing with Raynauld’s Condition , moonface, avoiding steroid weight gain and acne). I also always seek suggestions from you.

In the meantime, here are some general beauty things I’ve learnt that help me:

  1. Discuss whatever it is it with an appropriate professional (albeit a hairdresser, beautician, dietician) to find out what advice they  have and what can reasonably and safely be done – don’t forget to ask your doctor too

  2. For disfiguring skin blemishes Red Cross do regular camouflage clinics – I attended one at The Louise Coote Lupus Unit and the lady was very understanding, kind and helpful and prescribed concealer and powder as well as showing me how best to apply it

  3. Treat yourself to nice products and pamper yourself to make you feel good about yourself and make the best of your physical assets, to help draw attention away from less satisfactory things. I was bought some gorgeous bath and shower oil called ‘Relax’ by Aromatherapy Associates that never fails to make me feel at least a little better

  4. Smell good. Oddly, a little splash of my favourite perfume always makes me feel I somehow look better!

  5. Wherever possible, smile. It works inside and out.