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The 2 Faces of Chronic Illness


These days there are definitely two versions of me: the “inside the front door” me and the “facing the world” me. Same species, same person, same DNA, but oh my, you wouldn’t believe how different I can look.

My “inside look” is quite a sight to behold: yellow/grey/green-tinged skin; hooded, burning panda eyes; well-past-needing-a-wash hair, dragged up into a topknot; a chicken-legged hobble when I walk. And then there’s the uniform of the chronically ill: the baggy T-shirt, hoodie, all-day pajamas, tracksuit bottoms, leggings combo. Plus fluffy socks and slippers, obviously. Wearing a bra very much comes down to the mood on the day and how much extra effort will be required.

Very few people are unlucky enough to be subjected to this terrifying, unfiltered version of me. My husband and kids take the brunt of it, and they’re so used to it now that, God love ’em, they don’t even flinch. The postman is also subjected, but I do tend to hide behind the dog when opening the door.

On the odd occasion, this “inside look” has actually made it past the end of the drive, but I do try to limit this to the “beyond too tired to give a sh*t” days. Normally these outings involve the school run when I scuttle into the car wearing completely inappropriate night-time clothing and large dark glasses. My poor daughter only has to spot me from across the car park, slinking down behind the wheel, to know what sort of day it’s been.

These momentary blips aside, when I head out with a chance of meeting people I will always make an effort to spruce up, if for no other reason than when you look like death, people have to pretend they haven’t noticed, and it all becomes a bit awkward. My “outside the house” look is a throwback to the pre-lupus days. Preparation for this is like an episode of DIY SOS, sponsored by Batiste dry shampoo and the entire Bare Minerals range. First up is the need to change into items of clothing that aren’t shaped like a bin bag and made entirely out of misshapen cotton, lycra or fleece.

drawing of woman with bag over head holding sign that says this bag is for your own protection

Then there’s the makeup. Thank God for the makeup. It can take a skin tone from exhausted, sick-chic to healthy, sun-kissed glow in a matter of minutes. The trick, I have learned, is not taking the transformation too far. Like I did recently, when my husband felt the need to point out I was looking a little too “just back from a holiday” for the middle of an English autumn. Hair straighteners are a must, obviously. Finally, remove slippers, add shoes and ta-da: From half dead to healthy looking in a jiffy.

But here’s the bugger. The moment you make an effort to look like a healthier version of yourself, people think you’re cured. Or worse still, they think you were never really that sick in the first place.

“You’re looking great, are you feeling better then?” they ask.

Now there’s a tricky one to answer. Your illness is not their problem and of course they mean well, but…

“No, definitely still sick, just caked in makeup, rattling with pills and forcing a smile,” would be the honest reply. But who wants to hear that, it’s a guaranteed conservation killer.

I’ve found it’s best to just keep it simple and lie: “I’m fine” usually does the trick.

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