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 increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
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.
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.
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.
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.
- 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.
Posted on July 3, 2018, in Being Myself, Chronic Illness, Chronic Pain, Disability, Hope, Inspiration, Rare Disease, Uncategorized and tagged #sicklivesmatter, a body of hope, Christian chronic pain, Chronic Illness, chronic migraine, Chronic pain, color the world orange, crps, disabled, Dysautonomia, Fibro, global, hope, Inspiration, POTS, Rare Disease, rsd, world. Bookmark the permalink. 3 Comments.
Hi dear, thanks for bringing up that subject. It’s something I often ponder upon and try to see how I can see with the eyes of the less fortunate and build even more empathy from that, and then try to see where I tend to worry about things our privileged society has taught me I need versus what’s essential. But also thanks for acknowledging how you know that in other countries you would be considered a dying person rather than someone worth fighting for. When I mention to people someone like me would not have existed even in my parents generation (they were born in the 50s) or my younger aunt born in the 60s, it makes people look at me weird lol But I think that’s an important point for us to realize that we are lucky but it also brings along symptoms and situations never seen in human history before. That to me explains a lot why so many of us are told by doctors our conditions are not real because it’s suddenly new to tell. But no, it’s just that in the past most probably people like us were hidden, buried young (I would never have survived severe meningitis in previous decades), left for dead, abandoned on the streets and forgotten to history and family… Yet it is still like that in most of the world. I know my Chinese fibro friends were saying that they really struggled hard with family, even those who were born here in Canada, because of superstitious or ancient beliefsb like chi energy that is simply blocked. I know the reason why autism is a stigma in many countries still and hidden is because they blame the moms for that (a Chinese friend told me) or they say the mom had Hutchison syndrome over their kids in Hungary (my handicapped friend in a wheel chair had her son removed from her because they don’t believe I autism there). So yeah, lots to improve dear human species. Let’s keep up the fight and be grateful despite it all for all the people who believe in us.
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Hi Claudia! Thank you for bringing up an excellent point that clinicians are being exposed to so many new never-before-seen conditions today.
I’m so thankful you had the care you needed during your meningitis! That’s terrifying you had to go through that, Claudia.
We still have a long way to go here. And in another 20 years, I hope NO ONE will have to live through the nightmares that I have and that you have.
I didn’t realize that autism isn’t recognized in China…
“We do our best with what we know, and when we know better, we do better.” (Oprah)
Well said! Yes, life is definitely worth living, even in chronic health issues in chronic pain, knowing Jesus brings out the joy of our lives, even in the suffering.
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