Living With It…

Ghost in the Machine © 2002 Jane Waterman
Ghost in the Machine © 2002 Jane Waterman

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.

3 Responses

  1. Julie Rodriguez

    I hear you loud and clear. I too have the same symptoms which sometimes makes me wish I am dead but whatever. Like you, I suffer quietly on the couch until it passes. Sometimes it will last more than half a day, other times a couple of hours

  2. Jane

    I am sorry to hear that – it is my wish to create a world where people do not make assumptions about illnesses they cannot see. I've decided the only way I can live with this is to talk about it. I have had people abuse me for doing this, but I am going to continue. I hope you will also make the resolution to live as well and as strongly as you can. I want all sufferers of these illnesses to not only survive, but thrive, and I hope that through education and support we will do just that.

    In love and healing,

  3. Foresty

    I could have written you post on Living With It, word for word. Although we often know we are ill, the validation from the people who are supposed to help us (usually dr's etc) is just as important to help us fight disease as the the treatments and advise they prescribe. I've one too many battles to be considered a 'faker' at this point, and have a history of being an *obediant* patient, and yet, it never ceases to amaze me that there are Dr's out there that can even think this.
    One day at a time, and when that doesn't work….one moment. Loving healing hugs,
    Foresty Kath