I remember the first time I felt this tired. Not the exact hour, day, or even year, but I remember the quality of it. I was at the sink, preparing vegetables, and I got so tired that I had to sit on a stool, my arms propping me up on the sink. I was about 28 years old. I’d already been sick for five years, with an invisible disease that could not be seen. I had already had enough of doctors for one lifetime, and had perhaps had enough rejection of my condition – and by extension, myself – for more than one. There is something crushing that happens to the mind when a person of integrity is told they are a faker. It seemed my body conspired with the doctors against me in a grand lie, and even when my blood revealed the evidence of disease, it was somehow easier to write it off to a mental defect. And yes, I never admitted to being sound in that regard, however, on the journey, I lost a fundamental truth. The body knows when it is ill, and the mind knows enough to compare the body with disease to that without – to know the difference.
Therefore, it was quite a comfort to visit my rheumatologist last week, and to be told (to the highest certainty that any doctor is prepared to make) that Sjogren’s syndrome is my primary diagnosis, with secondary fibromyalgia. And that Sjogren’s, in and of itself, is enough to fit the picture of my symptoms – the pain, fatigue, etc, that can make daily living a grind at times. It was enough to talk to the doctor and be believed, to be a participant in my treatment, and to realize that, given that respect, I was free to believe myself. Why would anyone fake a disease, only to be scorned, disbelieved, and often told that their suffering was not anywhere like the quality of that of individual X or Y, when an individual Z decided to take it upon themselves to weigh people up and make a comparison.
I know better now than to let myself stay attached to such individuals, when the goal is to negate my experiences, shame me for speaking up, and condemn me to silence. I will not be silent to satisfy them. No more. I suffer. Sometimes the pain is so great that I wish to die to get relief from it, but that is not a solution that will sit easily on my soul, and certainly not on my wife and children, who would be left to pick up the pieces. So it is left to me to find a way to live with this, to seek treatment, but above all, speak.
If my speaking of it tires or bores you, irritates or disturbs you, that is okay. That is your reality, and you are entitled to it. This is mine. You do not have to listen to me speak. You can close the browser window, you can surf to another page. You do not have to pretend to be a friend or even an acquaintance. I release you from the burden.
But for those who suffer in silence: trapped in their homes, behind their computers, in their chairs, in their beds, I will keep speaking.
Yes, I remember the first time I felt so tired. Today, leaning on the sink, preparing the vegetables like I did 14 years ago, I remembered. It seems like it would not take much to make me crumble. But inside, there is a part of my soul so strong, it will prop me up against the ravages of disease. It will make me go on. It will make me seek treatment, and seek an answer. But it will never silence me again.