The Science of Suffering – #Medicine #Research #Help #Respect #Advocacy

I was reminded today that there is nothing that you can do or nothing that can happen to you that hasn’t happened to someone else before. Nothing that someone else hasn’t seen or felt before. Nothing that someone else hasn’t experienced before. We are all living through, living with and discovering a world that has been lived, felt and discovered for thousands of years; billions if you count time in memorial.

We are not unique in our experiences of life, death, birth, suffering, love, pain and Joy. We are such feeling creatures that it is our range of feelings and the depth of feelings that separates us from many other organisms.

Despite being a product of biology and science, very few of us are actually scientists or have any appreciation of the science that surrounds us. We are much more in tune to the feelings and emotions of living. They govern our choices and experiences much more than we appreciate or are even aware of.  Often we will make emotional choices before we will make rational or scientific choices. We will understand the emotions of a situation much more deeply than we will understand all the other forces or factors at work. This is probably humanities greatest triumph and deepest failing.

Why does the salmon continue to swim upstream, against the current when it would be much easier to follow the flow of the river? Why do animals cling to extreme climates to mate and perform and perfect the most elaborate mating rituals? Why do we cry at funerals when it is such a normal part of the life cycle? And why do we fall in love against the odds, and with people who can be toxic or harmful to us?

Conversely, where do we find the emotional courage and curiosity to go to places and do some things that we don’t yet fully understand the science of? Traveling to the moon, climbing the highest mountains and crossing the most dangerous terrain… because we have the urge and drive to explore and an insatiable curiosity to do all these things.

However, even with centuries of explorers and researchers we still only understand a tiny amount of the mysteries of life. There is so much that remains a unknown to much of science, yet there are very few emotions that have not been explored or experienced.

As I sit here in pain, and struggling with symptoms that I knew nothing about  before I got these illnesses, it occurs to me that there are many millions of others out there who know what I am going through and they go through it every day with me. Also, there have been many millions that have gone through all these things centuries before me. Its only that it has all been new to me that it has caused me such learning and growing, such suffering and discovery, and it is also new to all who have been recently diagnosed and those whose lives are changed forever.

Although the science of Autoimmune diseases is not fully understood yet, and there is still so much we have to learn, but as sufferers we are having to feel our way through it all. While the world may not understand what is happening, we know intimately the emotional and physical realities of what happens every day.

If we accept that as human beings we are only inspired to understand something that first captures our emotions. If we studied the stars when the first Astronomer was moved by the beauty and awe of the cosmos. If we first studied biology when the first person became intrigued by the complexity and beauty of the human body. And so on. Then perhaps the need to learn more about these diseases may need to be sparked by the worlds emotional connection to our plight. To our struggles.

In this way I believe that it will only be when the world feels a connection with us  and a respect for our courage and fight that the world will be more focused on understanding the medical mysteries of what is happening to us. In the meantime perhaps the best thing, and perhaps the only thing, that we can do is to support each other and unite. Giving hope and relief to our fellow fighters. Perhaps by advocating and letting people into our world, this may be the key to helping the world feel an emotional connection to us and our need for treatments and cures.

Human beings are capable of so much when our hearts and emotions are invoked. We can compose the most beautiful symphonies when our hearts are filled with joy and pain. We can paint the darkest paintings and then lift the spirit to the highest places through the use of emotions. Feelings and passions are the legacy that we pass on to others and the way we measure our life’s worth. Its also what we have to offer each other while we search for answers.

Pain, symptoms and suffering has taught me to accept the realities of what is happening to me at the cellular level but I also know that I must work through these emotions and feelings to reclaim a life. My life. It has always been my focus to be able to better control the feelings I have about my illnesses so that I can find a peace and happiness, even in the midst of these unpredictable and difficult challenges.

My husband is a scientist and has his Masters in Geochemistry and so he has a profound appreciation for some of the hurdles and challenges that science faces when it comes to treating these diseases, but as my husband he also feels the terrible pain and anguish that results from peoples misinformation and lack of understanding of what we go through. Had he not met me, loved me and committed his life to me he would not of worked so hard to help me advocate and support me on this journey. His heart has definitely fueled his eagerness to learn and to help search for answers.

It seems as human beings we tend to learn more with our hearts then we learn with our heads. This is why I hope that if we join together and connect with other sufferers all over the world, regardless of which Autoimmune Disease/s they might have, I hope we will be able to change the way these diseases are supported and the way future research will be pursued. I hope that some of the answers to finding cures may come from loving and respecting all those courageous people around the world who have the most amazing spirits that I have ever met. If we can love ourselves and help each other, then perhaps others will learn how to love and help us too.

Gentle hugs,


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