It pains me to say so, but it’s not every day that you’re told you have a chronic disease. And I mean that literally, for every word of it contains a significant truth.
Let’s start with the obvious part: ‘not every day’. Mercifully, it is highly unlikely that anyone will ever have more than a handful of chronic diseases, let alone so many that a new one can be discovered every day. And unless they involve memory loss, most diagnoses only need to be made once.
Far more serious is the content of that diagnosis: ‘you have a chronic disease’. It’s a statement that changes your life and alters your future. It isn’t a lifeline because you aren’t expected to recover but it isn’t a death sentence either. It’s a reality that you have to live with.
‘It pains me to say so’ is the personal part. In fact, it literally pains me to do just about anything. You see, the main feature of my own chronic disease is constant and inexplicable pain. My nervous system is in an overdrive so unpredictable that every movement hurts. And that’s on top of the emotional toll it takes to explain that to the word and instantly shift their perception of me.
Which brings us to the final truth, the only word we haven’t yet covered: ‘told’. People don’t tell you that you’ve got a chronic disease. They try as hard as they can to avoid talking about it. Your doctors don’t like to confirm it, your family doesn’t like to confront it, your friends don’t like to mention it and you yourself don’t really want to face it – but you must. Or at least, I must.
My diagnosis has forced me to adapt to new realities and limitations, and years of low activity levels have left me with plenty of time to think about how it has changed me. I won’t pretend to have reached the end of that journey, and indeed that is one function of this blog – to continue to come to terms with how and why I am different.
You see, pain divides me from the wider world. Not because I’m more important or at all unique, but because talking about chronic pain is emotionally painful for everyone involved. It’s difficult for me to open up about my weaknesses and it’s difficult even for loved ones to imagine my reality or know how they ought to react. There are many who don’t believe that my pain exists or who dismiss the ways that it affects me. It hurts to confront these people and it especially hurts to discover that some of them used to be my closest friends.
Amidst all that, it’s easier sometimes not to bother. To judge my illness a personal matter and to settle for that lofty goal of self-contentment, without worrying about what other people think. The journey appears lonely but linear, entirely within my own control. All I need to do is to accept the barriers around myself, and to maintain them.
But that’s how a stigma perpetuates.
And so rather than keeping these thoughts in a private diary, I’ve chosen to broadcast them to the world. They won’t always be pleasant thoughts, but any darkness is intended only to build the foundation of trust that will soon become our common ground. You’re still reading, so this project is not mine alone, but ours, a joint venture that may be uneasy but will be important.
It begins with an undertaking from both of us: You honestly attempt to understand what it means to live with a chronic and invisible illness. And I promise to open up and to remain open to you and to the word, in the hope that my honesty will not be rejected, condemned or – worst of all – ignored. One symptom I don’t have is memory loss, so I cannot forget how others have disappointed me before. But you’re different.
If you can believe in my pain then I can believe in you, despite my pain.
Diagnoses, barriers, darkness and stigmatisation all push us toward loneliness and withdrawal, toward a loss of faith. But for those willing to reach through them, they are also entry points that can connect us. By highlighting them, we can begin a discussion and we can prove that exploring chronic illness should yield far more than just knowledge of diseases, differences and disabilities.
And that’s what this blog is really about. I’m going to be posting a lot about myself, particularly at first. But the goal will always be to shine a light on the way that our society engages – or fails to engage – with the chronically ill, and what those of us on both sides of the divide can do about it.
We Believe in Pain is an ambiguous statement, true for anyone who affirms the pain of others yet similarly true for anyone who affirms that trust even when they themselves are in pain. It is a reminder that despite our different perspectives we can still unite to strengthen the impact of that declaration: we believe in pain.
It pains me to say so, but it’s not every day that you’re able to discuss my chronic disease. If we’re both willing to talk frankly, perhaps we can learn from each other.