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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via patpitchaya.

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

woman laughing

Acceptance: The Key to Finding Happiness With Chronic Illness

When I talk to people about my situation, most of the time I get the reaction “I don’t know how you do it” or “How are you still so positive?” My answer to this is acceptance. This applies to anything in life – if you can’t accept your circumstances, you can’t take control of them. [...]
two women sitting on a couch and talking

What to Say to People With Chronic Illness Instead of 'How Are You?'

First of all, thank you. I am not unappreciative of your attempt to show sympathy. I am highly aware of the abundance of crass people in the world today. So please, trust me when I say I thank you for your kindness. However, the chronic illness epidemic has made the classic, “How are you?” a [...]
painting of woman with short hair and lipstick

How Chronic Illness Has Taught Me to Be the Authentic Me

When I was little, one of the many of the things I wanted to be when I grew up was an actress. I was always infatuated with the art and music scene and loved watching movies and getting caught up in the atmosphere of the film I was watching. My friends and I would put on [...]
woman sitting on the train

To the Woman on the Train Staring at Me and My EEG Monitor

I don’t know whether you’d ever seen an EEG monitor before, but it seemed like you hadn’t so let me explain. Simply, an EEG is like an ECG but for your brain instead of your heart. It records the electrical activity in your brain, so that things like epilepsy can be diagnosed or ruled out. [...]