The worst ‘C’ word!

Get your head out of the gutter! That’s not the C word I’m talking about.

It is one of the words that I have come to dread most in the entire world. Up until recently, not only was I unaware of its meaning, I also didn’t know the weight these seven letters could hold when put together.

I’m talking about the word chronic. Chronic means something that continues for a long time – and it’s synonymous with other fun words like ineradicable and ceaseless. Clearly, it’s not a good thing, particularly when used in reference to an illness. I was unaware that Chronic illnesses existed until my younger sibling was diagnosed.

PSA: You don’t need to Google the Urban Dictionary version of chronic because I am not referring to a strong strain of marijuana.

Breakdown of chronic illness

You have most likely heard of the word chronic before, whether that be in a conversation, in a textbook or on social media, but what you may not know is how burdensome it can feel for some Australians when paired alongside illness. Chronic illnesses are actually the leading cause of illness, disability, and death in Australia. In 2011 chronic illness made up for 90% of all deaths in Australia,

A chronic illness or disease is a condition which persistently impacts a sufferer, therefore drastically affecting the overall quality of life. The impacts are long-lasting, and generally, the emphasis is on illness management rather than cure. Unfortunately, there are hundreds of types of chronic illness.  50% of the Australian population, which is more than 11 million people, directly suffer from chronic illness.

Given the huge variety of chronic illnesses, let’s talk about the ones you’ve heard of and the ones you haven’t. the best way to split the illnesses are the ones you’ve heard of and the ones you haven’t.

The ones you’ve heard of

You’ve probably all heard of the big chronic illnesses like heart disease, cancer or arthritis. All of these disease impact upon someone’s daily life.

The fact that you’ve heard of them is great! It means that awareness has been raised and that they are supported by funding. Funding can go toward a variety of things, Including: research, support and continuing to raise awareness.

Although you’ve probably heard of these illnesses, you might not have realized that they’re actually chronic conditions too.

As opposed to an illness like the flu, where you recover and return to your previous state of health. Chronic conditions linger. Often these diseases remain with the sufferer for life and have the potential to cause early death or other severe symptoms.

 

The ones you haven’t heard of

There are many chronic illnesses that the majority of the population people don’t know about and because they aren’t impacted by them, may never be alerted to their existence. These including Ehlers Danlos Syndrom, Marfins Syndrome and many more. Unfortunately, because many of these chronic illnesses are unknown to the general public they lack funding. This is a never-ending cycle as they are unable to research a cure or raise awareness without money.

One of the unknows chronic illnesses, above is actually the reason I found out about chronic illness. The one that opened my eyes is Ehlers Danlos Syndrome (EDS). When my sister member was diagnosed with EDS and I was completely unaware of the impact it would have.

EDS is a connective tissue disorder, that affects cells, skin, and joints. It can cause the suffers joints to disconnect when they are just going about their day to day life, doing simple things like walking or tieing shoes. It only impacts 1 in 5,000 people so it’s not as common and as a result, impact the lives of sufferers.not as many people know about it.

A way to help

One of the biggest ways to help support those with rare chronic illness is by raising funds. Fundraising can be crucial for unknow chronic illnesses as it gives them funds and awareness. The national organization for rare diseases (NORD) exemplifies how important fundraising can be as charities, ‘rely on in-kind donations and fundraising campaigns to sustain their operations and provide them with the means to grow.’

NORD also provides some great fundraising methods and tips, they suggest:

  • Using social media for giveaways, campaigns & for attracting a large audience
  • Having an online donation section on websites
  • Sponsor & Grant programs.

Trying to understand

As someone who doesn’t personally suffer from a chronic disease. It can be hard to understand and you often feel as though you don’t know how to help. A Chronic Voice is a contributor to the website The Mighty, a website that connects people with illnesses digitally. She suffers from chronic illness and gives a voice to those suffering and reach out too them.

She gives an insight into some of the struggles in her article, ‘What Does ‘Living With a Chronic Illness’ Really Mean?’ She writes:

“To live with a chronic illness often means the pain is confined to the inside of your body. It starts to fester under the skin where nobody can see, and by the time it does rise up to touch your physical features such that you qualify as “looking sick,” it has often climaxed to a life-threatening situation.”

Just from this phrase, she is able to give a slight looking into her life, and the lives of those who suffer.

 

Your Challange

The more we can all learn about a rare and chronic disease helps those who suffer and being able to understand how a person is suffering can have a big impact on them. I challenge you to:

  • Educate yourself next time you see a disease that you haven’t heard of: take a brochure or Google it when you get home.
  • Volunteer your time to support the charities or rare chronic illnesses; hand out flyers or work in a donations shop.
  • Next time you make a charity donation try and pick a foundation for chronic illness that is unknown.

 

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