(source)Regular readers know that very little is taboo on this blog. I've written about the less savoury symptoms of Dysautonomia such as my gastrointestinal issues on many occasions. I've also written about a lot of the dark thoughts and dark times when it's all too much. I'm pretty much an open book. And every time I open up those places I find a whole community of people who have also felt the same way at some point, but thought that they were the only ones.
Taboos don't help us. Taboos lead to silence and silence means we feel alone. Being frightened or too embarrassed, to express how we feel, or to share our experiences leads to an unnecessary burden. One which we could avoid or minimise through openness. Chronic illness is hard and not just in the physical sense. The emotional aspects of a life of chronic pain or chronic ill health are frequently underestimated. Medical practitioners rarely discuss this aspect with their patients. And patients are in turn often reluctant to discuss it with their doctors.
We live in a society where stigmas still hold strong to any expression of emotional stress. I have written a lot about the mental health issues of living with a chronic illness, both as a natural response to living with a difficult diagnosis, and as a comorbid psychiatric diagnosis. Stress and chronic illness go hand in hand. From the fear and confusion when symptoms first present, to the often complex and disheartening process of diagnosis, to the reaction of others to illness that does not end with a cure, to simply adjusting to living with all the changes such diagnoses can bring, stress is par for the course for many.
Yet the pervasive message we get from society is that to admit such a normal stress response is a sign of weakness. And so we hide it. Western culture has developed into one where we are told to feel happy all the time. You see this in the every day reactions of those around us. We find the courage to say things are difficult and we are instantly met with a silencing platitude. "You just need to have a positive attitude', "You don't get more than you can handle", "Others have it worse" "Well at least it's not...." "You can't...." "You shouldn't....." All of which ends with a patient shutting down and hiding what they feel. This of course is then followed with the inevitable "What's wrong with me?" "Why can't I just feel happy?" "I shouldn't feel this way" and what was a normal reaction to a stressful situation transforms to an emotional burden.
How can you work through your feelings when you are made to feel bad or weak by simply experiencing them? Only through open discussion can we change this. Chronic illness is enough of a burden to deal with without adding the emotional burden of silence.
Grief and adjustment must be addressed. These aspects of a patient's experience should not be an after thought. It is known that patient attitude impacts on adherence to treatments. A patients perspective and emotional reactions will also impact greatly on how they deal with and interpret their symptoms. But often it is only at the point of crisis eg a patient ends up in hospital or a marriage ends, that this is addressed. And yet that added burden, particularly the degree of burden could be alleviated through open communication.
There is no shame in saying things are hard. You can't work through what you don't acknowledge. It takes courage to say that it's not okay sometimes, that you're not coping, that you want to yell at the next well meaning person who wants to give you advice or tells you the sun will come up tomorrow, that some days you just want to pout or shout, or just be alone or irrational, or be a complete cow, or all the other things that go through our minds.
None of us are truly alone if we are willing to share our stories, warts and all.
And for that reason I'll keep writing this blog. I'll keep sharing the good and the bad. The crazy thoughts and the unglamourous side of this illness. If that means that even one person feels less alone or less crazy then it'll make it all worthwhile.
I'll keep chipping away at the silence and dispelling the taboo, because there is no other choice.
I love the line in this song, "I have a face I cannot show", it reminds me of all the times I've had to stuff down what I was feeling.
Day I: Why do I write about my health.
Day 2: Find a quote and use it as inspiration.
Day 3: I don't know about this, but I'd like to.
Day 4: A chronic handbag
Day 5: Health Activist Soapbox
Day 6: And I've done my back, because it's not like I had anything else going on.
Day 7: Setbacks. Vlog time.
Day 8: A letter to my health.
Day 9: No Blogging Day.
Day 10: Taking a little Time.
Day 11: Strength
Day 12: Chronically Blogging Australia