Suleika Jaouad on Why Self-Advocacy Matters for Patients With Cancer

After receiving her first diagnosis of leukemia at age 22, author and patient advocate Suleika Jaouad is now facing cancer for the third time in 15 years.

Jaouad, the author of the New York Times column “Life, Interrupted” and the books “Between Two Kingdoms” and “The Book of Alchemy: A Creative Practice for an Inspired Life,” now works with Blood Cancer United, the organization formerly known as the Leukemia and Lymphoma Society.

She recently sat down for an interview with CURE to share her advice for patients facing a diagnosis of cancer.

Transcript:

When I first got diagnosed, I was focused on treating and hopefully curing my leukemia. What I wasn’t as focused on was the impact it would have on my whole self and on my whole life. My very first piece of advice that I give to patients is to seek out support groups, to find therapy, to make sure that you’re attending to the more invisible imprints of illness on your mental health, on your work, and on your whole self.

No matter how brilliant and wonderful your medical team might be, learning to advocate for yourself is a crucial part of becoming a patient. I learned that through the misdiagnoses that led to my actual diagnosis, I learned that in Googling late one night the side effects of the chemotherapy I was about to start — and learning that they were going to make me infertile — and having to push to make time for fertility preservation treatments.

These are all things that may seem like an aside to cancer, but, to me, are an important part of making sure that you are taking into consideration who you are as an individual, not just as your medical record number, and whatever your particular priorities might be.

Every patient is different. At 22, I approached my new diagnosis like a journalist might. I wanted to read every study I could get my hands on. I wanted second and third opinions. I scoured the internet for information, and I lived by the notion of “knowledge is power.” This time around, given that it’s my third time going through this, the internet is not a useful place for me. In fact, it’s a scary place for me to go. So I’ve appointed a friend of mine who serves the role of advocate, who’s doing that research, who’s contacting doctors for second opinions.

However it is that you want to manage it, whether you want to be the collector of the information or you want to appoint someone in your family or friend group to help you manage that, pushing beyond the information that’s immediately presented to you and making sure you have all the information you need to choose the appropriate treatment path and supportive services for yourself is essential.

Transcript has been edited for clarity and conciseness.

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