Getting into our 30's we are all starting to notice those differences that define us as 'a little bit older', like those few grey hairs we get irritated at for a split second when brushing them away from your face and behind your ears. But as I look in the mirror each morning I can't help but notice the subtle changes that identify more than just the framework of my 31 years on this planet. They are changes that only I really see, the shifting face of this illness penetrating through the thin layers of my features and announcing its presence.
It's in the dullness of my eyes, not as bright and open as they once were, the heavy and pronounced bags underneath that even the most expensive make up products battle to hide - a heavy tiredness buried deep that all the sleep in the world could not fix, a speckling of blotchy purple redness sits often very indistinctly in a horizontal smear cheek to cheek via my nose, often mistook as a blush of embarrassment or warmth of the room and only I really knowing what it dictates. Along with a just off natural paleness, a slightly rounded jawline and the aforementioned peppering of red and purple continuing on my upper right arm, only an astute eye would carefully piece together the jigsaw of these imperfections and come to the conclusion that not all was as it first seemed.
In my own analysis, a person with Lupus has potentially 3 faces. In the forefront is the image of the person they were before chronic illness, the face that isn't slightly rounded from steroid use, the lines around the eyes and forehead that tell the tales of countless painful nights of lost sleep and tightened expressions of discomfort. This is the face you remember well, long for the most and regret not appreciating more at the time. This is the face of youth, of eccentric, tipsy and happy smiling faces imprinted on photographic paper from the past, the face of freedom and ability to stand in the summer sunshine for hours and alas the face of ignorance of what is yet to come. Now it is merely mask, a foundation that bears the marks of your experiences and the features of the new faces trespassing through.
The second face reveals the truth and reality of your life as it is now. A striking resemblance to the former you, it confesses the abrupt authenticity and imprints of your illness and your resilience in return. Like battle scars embedded in your skin, they routinely remind you of the trauma that you have faced and the likelihood of its recurrence. This is the true face of Lupus, like a tamed wolf it can be controlled by outside forces for a while, but it is still wild and free at heart and has the power and ferocity of mother nature to resume its former identity, attack and ravage without warning.
The 3rd face is not so much of a visual form returned to you from a reflection, but an eventual state of mind built from your experiences. Not everyone will encounter this face, not everyone will choose to enter this world of conclusion, understanding and acceptance. It involves total resolution that you are not going down with out a fight, turning and facing the wolf in the eye all the while scared beyond belief at what he might do next. He is tranquil as a pup when relaxed, but a killer when aggravated and all the time you know full well that previously he had a head start and attacked not out of nowhere. Unlikely again though, you see the wolf will always have the control and pull and snarl, but now you have the leash. The 3rd face is of course that of the butterfly. Despite being synonymous with the malar rash that affects our beauty at skin depth, it represents the beauty and serenity of our minds and body post war. Our bodies delicate still, but as person freer and enlightened and accepting of our own fragility.
Once engaged in the world of blogging, social media, networks that are associated with lupus, talking and reading the posts of other sufferers and their families, never has it been more apparent how prevalent these creatures are closely associated with the disease. To a newer or more innocent eye, the use and comparison of this imagery and affiliation to the disease could seem oddly peculiar. To us it's a platform or metaphor to describe the complication and unpredictability of our illness, it helps us categorise and make sense of what we encounter in our daily life.Basic research via your Google search bar would teach you that the term Lupus is the medieval Latin word for Wolf, and the connection to illness and disease first recorded by a 13th century physician to describe facial sores and scarring that resembled a wolfs bite - assumed to be Discoid lupus variant - now the term is used to describe all types of the disease. The butterfly is of course as I have already mentioned rooted from the Malar rash so many of us suffer with. Little imprints of red and pink brought on by stress, sun exposure, illness or flare or just because it can, often little butterfly kisses or sore red marks it's often the only visible sign of this invisible illness that tells a misinformed public that we are different.
The theory of evolution instructs us that of course a butterfly would not win a battle against a wolf. So obvious the vast divide in physical strength and presence between the two, it would only take one swipe of a paw to flatten the colourful Papilion. But the butterfly is quicker in speed and thought, at the warning of an attack the butterfly can reach deep inside for all it's strength, flutter high into the sky, stretch its wings and rest until the ground is safe again.
