The thing that still amazes me the most is how things can change and worsen overnight. Overnight we can go from coping to pain and then torture. Why? What happens? What makes us go into these hellish places? The answer is we don’t know. But it is happens all over the world every day.
That’s just the reality of life with these diseases. They can and will torture you whenever they want. No questions asked. And they can worsen overnight.
People on the outside don’t understand this. They think that you must have done something that has caused you to suffer. But after 10 years of this, I can say without a doubt, nothing I do makes this happen. I am no longer in control. That is also the hardest part of it all. I am no longer in control. Many of us are not in control of these diseases as they progress and worsen.
Growing up we realize the world doesn’t revolve around us, and the world will not come to us… but when we can no longer come to it either…Then what? What if the world has made no space for you and your plight? You aren’t one of those lovely memes or poster child for health and vitality.
It’s a terrible reality to face. No money and no amount of things can replace life and ability.
The idea that someone could be compensated for loss of life or ability is completely unimaginable to me. There is no financial compensation in the world that I would accept to live like this. None!
The only thing that matters now are the moments. And trying the manage each moment.
So… What is a life worth?
This month is a sad anniversary. A year ago a friend who had a chronic illness took her life after she had watched her health, life, family and marriage crumbled around her. All the things she worked for slowly disappeared.
Her body, her pain, her loss, her grief and her loved ones turning away was too much for her to bare. No one should have to go through that. But chronic sufferers do. Everyday.
Chronic illness can be a series of losses for many people. Loss of health. Loss of control. Loss of abilities. Loss of independence. Loss of career. Loss of credibility. Loss of friendships. Loss of identity. Loss of relationships and marriages. It can be unrelenting.
And then there are people who will say things like “cheer up! You just have to focus on the positive” … like it is somehow all your fault because you were not positive or cheerful enough while all this was happening around you!
It is crazy how so many people will respond. Even crazier that they would try to blame you for what has happened! It is easy to see why so many can’t endure it.
I remembered my friend today. She fought so hard to hang on to life. To make life happy for other people. To find a life after hers fell apart. Taking her own life must have been one of the hardest things she ever did. I remembered her today as I awoke in agony and wanting, no begging, for release. We were going to go into the garden today. We were going to try and have a kinder day today but it wasn’t to be. That was 18 hours ago… 18 hours and 10 years ago…and counting.
You might think that her story is exceptional or rare. The saddest part of this whole story is that it is not rare. Not rare at all. The saddest part is that there are millions of similar stories all over the world today. Right now.
Young people between the ages of 15 and 30 living with a chronic illness are three times more likely to attempt suicide.
Chronic illness and chronic pain can increase risk for suicide by 90%
People with multiple risk factors including chronic physical or mental illness are more vulnerable to suicide
People attempt suicide for relief from unbearable pain.
– the guardian
It is almost unbelievable that people can be so harsh and critical of chronic fighters when you see and hear what they must endure. Even harder when you are one yourself.
I recently read an article on the life of Dr Graboy. A physician. He wrote …
”Now in the tenth year of a battle that will continue for as long as I live, I have watched as huge swaths of my abilities have calved like chunks of ice falling from a glacier into the sea. My circle of friends has shrunk, the role I used to play in family life has diminished dramatically, and my medical career is over. The physical word I am capable of navigating has become a fraction of what it once was. My mental processes have slowed to a veritable crawl. My ability to express myself is profoundly compromised… Control over my body is a formidable, ongoing struggle of mind over matter. As the disease progresses, my sense of myself erodes in parallel and I mourn those bits and pieces as I would the loss of a loved one.”
Although you don’t have to be a doctor to experience this level of loss and despair in a chronic disease but people are more likely to take your ordeal more seriously. Why? I really don’t know. Ignorance mostly.
The longer I have been ill, the more people I connect with, the more interaction and awareness there is, and the more real life stories I become aware of, the more I hear about and know sufferers who have attempted suicide.
It breaks my heart.
After such a painful event as a suicide people always tend to say and ask the same things. What could we do? How could we have known? Why did [they] do this? … always so many similar comments.
Although I won’t pretend to say that everyone is the same and all answers are easy. But when we are talking about someone with a chronic illness and who has been struggling for many years, then I believe we need to be aware of the high likelihood and contributing factors that all sufferers must contend with. Eyes must be made to open. Hearts must be engaged. Support and awareness must be in place now, so that many more of our wonderful fighters don’t feel so alone and vulnerable.
If the statistics are correct (although I believe they are very low) more than 150 million people worldwide have autoimmune chronic illnesses. That is a lot of mothers, fathers, sisters, brothers, sons, daughters, husband and wives!
You can’t replace or put a value on that many lives and they are most definitely worth the cost of helping them know we love them for all are and all they go through. Let’s assure them that their pain and suffering counts.