Beyond IBD: transcending chronic illness

Learning Sickness: A Year with Crohn’s Disease by James M. Lang is a must read for those with IBD, particularly those who have not yet made contact, and exchanged stories, with other IBDers.

From diagnosis to understanding

As such, some might say it is a book for the ‘newly diagnosed’ but what does newly diagnosed mean exactly? Within one year of diagnosis? Two years? In practice, the transition from first symptoms to diagnosis to understanding and beyond can be a very different experience for each person.

For James M. Lang, the author of Learning Sickness, it was five years after diagnosis that he began to fully appreciate the reality of the disease within him, and to recognise the importance of taking responsibility and control. It is this year of learning which he documents in his book. Prior to that, he says:

I saw and understood the disease as an external invader… The disease was distinct from my self … what could my colon, after all, have to do with my emotions, my memories, my behaviour…? p.7

Am I the only one to feel this way?

I read Learning Sickness soon after its release in 2004, six years after my initial diagnosis and in the midst of a new phase in my own disease and personal understanding. In those six years I had experienced varying levels of disease activity and had used ‘conventional’ medication and ‘alternative’ treatments. However, in time, I found myself back with a new gastroenterologist, in a serious flare and taking strong medications.

With a renewed interest in self-education, I read available books, pamphlets and articles on Crohn’s disease, which were usually produced by medical practitioners, IBD associations and pharmaceutical companies. These spoke in a measured language about typical and atypical symptoms; the statistical effectiveness of various treatments; and about the need to keep a positive outlook.

But they did not, and probably could not in that context, describe how IBD really feels: the churning, uneasy sensation of nausea; the slow waves of cramping that wash across your abdomen; the stabbing pains that cause you to catch your breath; or the many other physical symptoms experienced in different ways by different sufferers. Neither did they detail the anger, fear and helplessness that you would often feel every day.

This blank in the literature left me wondering if anyone else felt the way I did.

Sharing the details of our stories

Learning Sickness is rich with such details. Lang describes his early frustration with “patients in published books who would describe their troubles with easy euphemisms” and his desire to know whether they, like he, had “lain in bed late at night and wondered whether the disease is slowly burning holes into the wall of your intestines…” p. 59

Such raw honesty was a revelation to me at the time, and continues to assure me that, no matter how I feel, it is highly unlikely that I am the first person to feel this way. Lang goes on to say that the discovery of online IBD communities, and reading the stories of others, helped him gain new perspective on his disease. In time he realised that:

It is through stories that we make sense of our lives, and the experience of disease is no different. We … create order order from the chaos of our daily experience through the narratives we tell each other… p. 137

I … seek out such stories wherever I can find them. I do so partly in order to provide me with new perspectives on living and coping with my own chronic illness, and partly to help others experience the same sense of satisfaction and release that has accompianed the telling of my own story. p. 140

The Learning Sickness story

Ultimately, Lang was moved to write Learning Sickness because he believes it is important to share one’s stories. And it is, first and foremost, a story. It is a narrative to be read from first page to last, not to be dipped into in an attempt to quickly draw out ‘key lessons’. Lang expressly emphasises the importance of this:

The real connecting themes of each chapter [of Learning Sickness] are the lessons… I allude to each of those lessons in the chapter titles. But they are not … offered in bulleted or numbered lists within the chapter. To offer them in that format would have made them … too divorced from the experiences in which they were learned, and hence too easy to ignore or file away with all of the other bits of wisdom and advice we get from our friends and our families, from the television, from our pastors, from the comic pages, and from the latest self-help craze. p. xvi

Learning Sickness is easy to read, with a conversational tone which makes you feel as if Lang were telling you his story while you sat with him in his home. Partly, this is due to the remarkable (and at times painful) honesty with which Lang describes the highs and lows of his struggle, particularly those times when he made ‘bad’ choices (eg. delaying visits to doctors, drinking heavily, ignoring the reality of his physical condition).

Again, this honesty assures us that we are not the first to make ‘bad’ choices when it comes to our health, and also encourages us to forgive ourselves for those times when ignorance or impatience or pure frustration led us to make choices which, we realise with hindsight, were not the best.

Conclusion

I not only recommend that IBDers read Learning Sickness, I recommend you buy the book and keep it on your shelf for those times when you start to feel that no-one else has felt the way you feel, that no-one else has experienced what you are experiencing. The details of your story may not be the same as that described in Learning Sickness, but the underlying message is applicable to us all - we all have bad days (in fact, terrible days) but we can go on and we can learn and we can take control of our life and we can find joy everyday (even if sometimes we have to look very hard).

Finally, for me, the most important lesson of Learning Sickness is illustrated by the very existence of the book. Lang says:

Chronic illness has taught me to see, to understand, and to respect the secret pains of others. It has taught me, as well, to make my own pains a little less secret. p. 141

Coping with chronic illness and pain is difficult enough without the added burden of keeping it secret. Be honest with yourself and others, you might be surprised how many of them have secret pains of their own. Share your story more widely if you wish, local support groups and the internet both provide opportunities to connect with other IBDers. Learning Sickness encouraged me to be more open about my Crohn’s Disease and, ultimately, to start this blog. Doing so has released me from the burden of ‘keeping a secret’ and may, in time, help others do the same.

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