Why I Wrote a Book About the Chronic Illness Experience


When I first became ill as a teenager, all I wanted to know was what was wrong with my body and how it could be treated. At the age of 18 I was diagnosed with endometriosis, which was operated on with a few laparoscopies and eventually treated with the contraceptive implant. When I was diagnosed with syringomyelia and segmental spinal myoclonus at the age of 19, it wasn’t that straightforward. There was no cure, this was my new life. Surgery was deemed too risky and so I was given my first daily cocktail of medication to control the symptoms as much as possible. I’m now 22 and am still relying on medication with no answer as to whether or not I will ever be able to work or have what many people would consider to be a “normal” life.

 

When I was given the diagnosis of my spinal conditions, I would search the web for any books, guides, videos about my conditions so I could deal with them in the best way possible. After all, there’s only so much medication can do. However, because what I have is so rare, all I could find was books full of medical jargon I couldn’t understand and case studies that were not necessarily relevant to me. None of these were helpful in the day-to-day challenges of life with multiple chronic illnesses as well as the social ones. These were published for doctors looking at things from a biological perspective, not the people going through the social, economic, emotional challenges on the other end of the spectrum. Granted, there were books for living with specific conditions, but not one all-inclusive self-help book, which was what I was looking for.

At the age of 20 when I was relatively stable (in that I wasn’t going through a relapse or stuck in the hospital), I decided to write my own. I had gone through relationships, jobs, depression, experiences of ableism and much more while struggling with chronic illnesses. I felt it was almost my duty to use these experiences to help others as I enjoy writing anyway. I thought if I could help just one person to cope better with chronic illness, it would be time well spent. I decided to talk about the good and the bad that comes with disability and chronic illness (the good being realizing who your true friends are, for example). At the same time, I wanted to give advice on how to make certain aspects of this life more comfortable and fulfilling.

I gave real life experiences and anecdotes to make the book feel more like an open conversation between the reader and I. I took care to not focus on any specific conditions or disabilities in the book but to cater my advice to anyone with any condition(s). For example, I’d provide alternative options for those with allergies or sensitivities, and so on.

I felt empowered by writing this book because I wasn’t just exposing vulnerable parts of myself, I was using them to help others and to raise awareness of the complexity of life with chronic illnesses. By writing this book I am representing those of us who have no cure, who fight ableism on a daily basis and who can, at times, feel invisible.

The book is called “My Chronic Illness Survival Guide” and is available on Amazon Kindle.

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Thinkstock photo via patpitchaya.


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