Thursday, 5 May 2016
Why awareness for incurable illness is so important...
Before you read this post, I firstly ask you to put yourself in a position of being diagnosed with an incurable, rare disease. It is almost an incomprehandable outcome for indivuals to think about, yet it is the reality for many people that I have the pleasure of knowing. Illness does not discriminate, nor does a further impending disability from this outcome. Now imagine you are stuck in this phase for years on end, with limited help, knowledge and as a result limited hope because that is the path that many, including myself have walked and continue to walk. Imagine you have been faced with the loss of your health, your youth, spending time doing the things you really love, the things that make you who you are. Instead, your life becomes replaced by hospital visits, emergency room dashes, untold amounts of medication to help you function in every little way. Normality is replaced with an existence typically confined to your home or bed, pacing every small activity you do and a non existent social life is implemented as a result. Fear, worry and concern over rule happiness, hope and freedom. Isolation and sadness replace your job, human interaction and hobbies. Goals are put on hold for a period of time that has no clear expiry date.
Imagine almost all of your abilities have been stripped of you. Imagine that depending on family members and friends for really simple and mundane tasks becomes your normality, despite knowing how abnormal that is. Imagine going to countless hospital appointments in a month and being the educator, informing doctors of conditions they have limited understanding and knowledge of. Imagine being frightened of visiting your local GP because they are out of their depth with your diagnosis. Many people are in this state through limited awareness, limited understanding and limited amounts of the population being currently diagnosed. All of this can change when we start working together to continuously raise awareness.
Awareness is progression for an entire community, it has the ability to change more than one persons life. May is the month of awareness for many chronic, underrated, incurable illnesses. From Ehlers Danlos Syndrome to Dysautonomia, M.E to Lupus, Mental Health to Cystic Fibrosis and Lyme Disease. Illnesses that myself and many other individuals in this world are living proof of the force and ability these diseases have behind them, to completely turn your life upside down, removing almost every form of normality as you once knew it. Illnesses that give you almost too much time consider how much your life has changed to the point where it seems irreparable. Illnesses that have such an abrupt nature you can't help but live with fear of the unknown. Illnesses that cause you constant worry, that you lose sleep and concentration. Illnesses that can be so consuming that you lose hope more than you gain it.
Chronic illness leaves you in a vulnerable and debilitated state. A state that you begin to believe shall not pass when its presence has been a part of you for so long. It becomes the clothes that you wear and the dictator of your day, through no fault of your own but a genetic fault. Awareness has the potential to change a large mass of patients lives as they know it, it has the ability to take people from existing with these illnesses to living. Awareness starts as a cry for help but becomes a cause for solidarity. What is changeable in our circumstances is how much we progress in medical terms. This solely relies on awareness, science, knowledge and commitment.
Awareness brings the diagnosed hope within their lives and circumstances, a chance to regain a quality of life and a reason to not give up. Awareness means educating others, disregarding myths and spreading the word to anyone that will listen or takes an interest. Awareness is the chance for a cure, finding the most effective and correct treatment for each indivual patient and an overall healthier and happier life. Awareness means quicker recognition for a patients problems, a quicker diagnosis because the signs have been spotted, a care plan in place and a community of support. Awareness will allow patients to not feel frightened of their futures.
I am currently a sufferer of all of these diseases. These rare diseases have completely stripped me of my life yet I don't want that to be the case for those diagnosed in five, ten, or twenty years time. I have hope and faith in the strides we would have made as a community and society by then. I have hope that people will hear our calls on debilitation and help us continue to raise awareness, funds and with that raise a diagnosed indivuals, quality of life. Providing them with hope, a future and many forms of success back in their life. Nobody in this life is invincible, we will all succumb to something much bigger than us and it can happen out of nowhere. Something out of our control, that will be incredibly painful for us as indivuals and our families.
When I see how far many of the illness have come in the space of even two years, it makes me thankful. It also brings me some hope that this cycle can continue within its positive strides. The word is spreading, slowly but surely and it is all down the the hard work of advocates, specialists, professors, charities and the sufferers. Alone our voice may only seem like a small drop in the ocean but it all adds up to make a wave. Every voice counts in the grand scheme of things, everyone's time and efforts put into raising awareness doesn't go a miss. Raise awareness in the ways you feel you are able too. Our illnesses deserve to be heard and addressed within the public domain.
On an end note, I ask you to share, retweet, or have a conversation with someone this month and raise awareness for a rare, chronic illness. I ask you to highlight how much impact it would make onto the life of the sufferers if you had a part in using your voice or abilities to raise some awareness. If you are a keen fundraiser, please think about perhaps helping smaller charities raise extra money or awareness. We will need to raise awareness for the rest of our lives, after all most families will be affected by illness in some way, shape or form.