SUFFERING THE SILENCE!

There is a stigma, a certain kind of shame associated with having an invisible disease, having a condition people cannot see, one that most people cannot understand, being unable to explain it because you lack the words to make someone see it from your point of view. Trying to hide a “weakness” that causes physical, emotional, psychological, and financial torture! Well, no more! The time has come to stand up against and for what we have! It’s not my fault my immune system decided to go berserk! That every single day is a struggle to love a body that I cannot control! That my immunosuppressant medication makes me look better than I obviously feel! What’s it to you that I’ve gained a few kilograms? That my skin is a bit fairer? You only see what’s on the outside! All that matters to you is that now I’m another chubby fella with a stomach I don’t much care for! But do you see the amount of hair I’ve lost? (Let not the dreadlocks fool you! Why do you think I have them in the first place?) The concoction of pills I take on a daily basis? The pain I have to endure just to be able to go about “normal” life? The enormous bills stacked in my hospital file (yes, I do have one) There is nothing pretty about an invisible disease….sometimes, it pays to have the external symptoms, because somehow, it actually validates that I am sick, very sick in fact.

The unpredictability that comes with this condition may be the most painful aspect of this disease. Not knowing if my body will prevent me from living the kind of life I envisioned, the numbing fear that debilitates even my ability to think too far into the future, the morbid thoughts that attack a little too often, watching the fear and sorrow on the faces of my loved ones yet still trying to be strong for me. We do not talk about all these because it is “taboo”! And who the hell made it so?! Certainly not me! I’m gonna break free of the bondage; because my disease has decided to not-so-subtly take charge of me and I urge you, and you and you, to do so too!

It sucks that I cannot remember what it is like to be “normal”. That pain, memory loss, stiffness, medication, and appointments have become such an integral part of me that I now cannot remember life before that! To have to work harder at every single thing, from waking up to walking, to talking and you think sleeping is a breeze? Not that either! Got to work at it too.

I am more than just a diagnosis, I am more than my condition, I am more than Lupus! I am more than my multiple diagnoses! I will not apologize for my condition nor will I feel sorry for myself. It is what is and that you feel I am less worthy of love, of care, of affection, that is your problem NOT mine! Everyone deserves love despite their battle, their struggles, and their scars. I will not lose hope and isolate myself from the world because of things outside my control. Rather I will stand up for myself, I will keep on fighting till I can fight no more, I will keep the hope alive, I will speak of courage and strength. Lupus has brought me to my knees but my joy and happiness is permanent and no one has a right to try and take that away from me….and I sure as hell won’t let them!

I try to be strong and hold a positive outlook on things but there are times when I break down and worry about what the future holds. Despite being scared shitless, all I can do is be brave, for myself and all those who walk this journey with me. Time to be passionate about life and dedicate me to making my dreams come true, with and despite my condition because I will always understand and accept ME….and that’s all that matters!

For all you who live with a chronic, debilitating, invisible disease; Be gentle to yourself; be patient with yourself; forgive your body; celebrate your struggle and survival. You are doing the very best you can. Believe in yourself because therein lies a truly extraordinary power!