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Lupus?... But You Look Okay

Why must we always hear these words?

PHOTOGRAPH TAKEN BY KAT JAYNE, COURTESY OF PEXELS.COM

These are the words that I, and anybody else with an invisible illness, hear every day.

We could be in extreme agony, organ failure, or on the verge of death... but I can guarantee one thing, and that is that somebody will say those infuriating, insulting, and often soul-destroying four words.

Do they think that because we look OK then we must be telling lies, that the only real illnesses are the ones that they can see?

Or do they believe because we struggle on, often in silence, we do not need their support, understanding or even the slightest consideration?

When did we, or they, stop being human?

Every day of my life for almost ten years now I have struggled with constant pain, exhaustion, brain fog, rashes, and more recently, hair loss.

Then six months ago when the pain in my back had progressed so much that I could not stand, could not sit, could not move but could only lay propped up by pillows so that the pressure was taken off of my spine, I was diagnosed with Lupus SLE.

Since then I have been given a multitude of meds, some with foul and disgusting side effects. I cannot go into the sun because these meds make the pre-existing photo-sensitivity (that is an allergy to the sun to the majority of us, and yes it is possible) more severe so that even ten minutes in the sun wearing factor 50 + sunscreen will result in me breaking out in a blistery and extremely itchy rash and cause me to go into an agonizing and exhausting lupus flare. 

This summer has been the hottest and sunniest summer that the UK has experienced for almost forty years and I have spent it living like a vampire hiding in my home, from the sun...Why? 

That would be because I want to remain looking OK.

I don't want a terrible rash that would have people stepping away from me in the supermarket queue or have parents pulling their children away from me 'in case it's contagious' like so many other sufferers have experienced. 

But as if aches, pains, fatigue, exhaustion, and an allergy to sunlight were not enough, this terrible disease can attack any part of my body... that includes flesh, muscles, bone or, in the more severe case as many of my loopie friends and any support group could tell you (the tales are truly horrible), my internal organs.

If this disease were to attack my heart (as has been suspected on many an occasion) I could suddenly drop down dead, if it were to attack my liver or kidneys, it could do so silently so that the damage was not discovered until it was too late. 

I could equally, as many have, develop any number of serious chest and lung complaints or this disease could attack my brain, damaging vital cells, corrupting my memory, or even effecting vital bodily functions or causing seizures or strokes.

Yet I would still look OK...

The truth is that the only symptom that doesn't make me look OK is the slightest one of all and often the easiest to live with.

Thankfully, thus far, my symptoms have been relatively mild compared to those of many other sufferers yet although I may look OK, I am most definitely not... and unless, by the miracle of modern medicine, a cure is found or even more reliable and less disruptive meds than anti-malarial medications, steroids, and chemotherapy then those of us that suffer will just continue to struggle on...Will continue to try to look OK despite the fact that each day we live a life of torture.

For more information about lupus so that you may be one of the true understanding few please feel free to visit;

Lupus UK

LUPUS UK - The National Charity for People Affected by Lupus
LUPUS UK is the national registered charity supporting people with lupus, assisting those approaching a diagnosis and funding research and specialist nurses
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Lupus?... But You Look Okay
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