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Discussing Chronic Illness & Disability Globally

Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it SHUT DOWN! It got ugly in here, but thankfully, it wasn’t out for long.

Just the short spell of overheating, and flaring in turn gave me a better appreciation for what people have to bear all over the world. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same privileges.

That’s something I’ve been considering more and more in regard to health.

Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.

I’ve had the incredible opportunity to “meet” individuals from all over the world, in many different circumstances throughout the disabled online community. It’s inspiring how strong people can be, beating the odds every single day.

So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.

For anyone else in this country, my circumstances are quite the opposite of what anyone would hope for.
But for people in so many other parts of the world, how privileged might my life seem to them from the outside looking in?
I have running water, new clean clothing, a comfortable bed, air conditioning, food to eat every single day, and electricity for countless electronics and assistive devices. I have people who love me, ready access to medication and health care specialists close to home. Most of the things I need are only things I want, and what most others simply live without.
In other areas of the world, or in another time in history, I wouldn’t have chronic illness- I would instead have a terminal illness.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.

It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.

In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.

Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.

Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.

I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.

A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.

Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.

I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.

“Hardship is but for a night, but joy comes in the morning.” That promise of an eternity of joy and healing gives me hope to continue facing each day. I would have lost this battle long ago had it not been for His strength.

I’m not the young woman I was 13 years ago- I’ve been changed by this journey.

There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.

I know having multiple rare diseases isn’t a life anyone anywhere would wish for.

Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.

And so is yours.

*******

Below is more information about our disabled brothers and sisters around the globe.

-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.

-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)

-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.

Concerning statistics.

  • 70 million people need a wheelchair, but only 10% have access to one
  • 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
  • 93 million children worldwide have moderate or severe disability

Mental Illnesses are on the rise worldwide.

  • Depression: 300 million people
  • Bipolar affective disorder: 60 million
  • Schizophrenia & other psychotic disorders: 21 million

Chronic Illness has become a worldwide epidemic.

  • 300 million people live with Rare Diseases (1/2 are children).
  • Chronic Pain effects 1.5 Billion people around the world.
  • It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).

See World Health Organization and NORD (National Organization for Rare Diseases) to read more.

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This Day doesn’t belong to This Pain

You have every right to say that your days are bad from diagnosis onward. Pain roars and screams and spreads and bites down. It truly touches every part of our lives, and tries to destroy all that it touches.

But you are not your body. You are more than flesh and bone.

You have the power to tell your story the way you want it heard.

You don’t have to choose whether your days are black or white, either good or bad. This isn’t a multiple choice test between succeeding or failing.

We are all striving to find balance every day, moving forward despite our circumstances, seeking our best selves.

That is a victory.

You are an Overcomer- Never forget

I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.

Each morning, you might want to start fresh, and leave the past behind you, right? But please, friend, don’t forget everything you’ve overcome.

Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.

Don’t forget when you ran out of every last molecule of energy you had left to give, and you had no idea how you would keep going another moment longer…. but instead of giving up, you found something else inside of you that carried you forward. Don’t forget that driving force within you.

Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”

Remember when you were ready to forget it all?

How are you still here after everything you’ve been through?

Don’t forget how you made it!

Don’t forget that force inside of you that begins when you’ve reached the end of yourself.

Don’t forget.

Ever.

As seasons change, as life continues to surprise you, carry yourself as the OVERCOMER you are.

******

 

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