Brave for today!

This is about what it is like to live with a chronic illness, I hope that you can share this with people so that they too can understand chronic illness.

Arrogant and demanding, ferocious and unappealing, consuming, and unassuming. To live, to be, to exist as it is, a life revolved around hurt and critically exclaiming disgrace. A dream to rest, to sleep in peace, not be awoken by your aching body. From head to toe, it burns, it aches, it throbs, never ending, life enduring pain. Little to your desire or the knowledge of those around, pain not being your only hard endure; countless days you weep and hide as the pain attacks you from the inside out, consuming everything that you once knew true. You lose yourself in a thunderous storm, you forget who you are, your purpose and that you are so much more. You tire, exhaustion forever, never ending no matter how long you sleep for; it takes everything from you and you are left to face the day, the same day as everyone else with a fraction of the energy, you are now a spoonie and you feel like nothing more. The energy not gained as you are not enthused for food; the pain literary takes everything, every need, want, it tries to take happiness but you fight so hard to hold onto it that in the end, the battle to save it has hurt you so much that you lost it within the fight. To be in constant, crippling pain is one thing, but we don’t get support we are unknown, unrecognized, and uncared for by everyone it may seem; doctors don’t believe us or intervene, family, friends we battle alone a lot of the time. It feels never ending, scared and frail we all stand tall, if we can stand at all; we put on a brave face, we face each and every day, we have gotten so good you probably don’t even notice that we are sick. You don’t see us fall into bed, the meds that we take just to feel alive or us crying ourselves to sleep because it is all too much and we can’t even begin to imagine getting up the next day and facing it all again. You don’t understand the battle that we must endure every single day just to appear like everything is okay when in reality everything is far from okay; we are broken and hurting in every way.

But there is hope, we are broken but we still have all our pieces, we can be mended and made whole. We can laugh, smile, we experience happiness and joy, it isn’t always a cover for the darkness in our life. For some of us there is hope that we will be cured, that we will find a treatment and even for those who’ve been told there isn’t a cure, they still have hope. Hope is the one thing that we have, that we fight for because without hope there is no reason to fight another day, without hope we are nothing. We are sick but we still have ambitions and dreams, we still work really hard just differently, we are different and different can be a good thing. We are able to discover what is really important in our lives, it helps to take away some of the negative aspects of your life, it can be quite beneficial to notice what people and things are hurting you and sometimes it takes a time or sorrow to be able to see these things. Illness is bad, but you can gain amazing things, through this I have discovered myself and my purpose in life as a doctor and this ambition keeps me going every day; see it is the little, significant things that make the greatest of differences in people’s lives.

I hope to spread the message about Chronic illnesses as for 6 years now (since I was 11) I have battled a chronic illness without the assistance of medication or proper treatment and I don't want anyone else to have to go through what I go through everyday because it isn't fair and if I could do one thing I want to raise more awareness for treatments to be found and for people to know that just because you can't see an illness doesn't mean that it isn't there. It is difficult to live as a teenager with chronic illness, I assume that it is very difficult at any age; I don't get much help because "I am too young to have a chronic illness" or "it isn't that bad" or they say "it is all in my head." It isn't fair and this needs to change. I don't want your sympathies, I want awareness, I want a change to be made so that we can stop the mistreatment and we can give people a chance to strive, to live, to be without fear of pain.

*** I just want to add that a spoonie is a way in which people with chronic illnesses can measure and keep track of their energy levels.

Author's Note

Please ignore all grammatical errors.