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Going Digital When You Have MS

ORIGINALLY PUBLISHED ON MS SOCIETY| 07 SEPTEMBER 2018

Technology is so embedded in our everyday lives that I’d challenge anyone to go more than a couple of minutes without using something digital.

 

But what is the future for digital when it comes to helping people with MS? When I was diagnosed ten years ago, I ended up feeling very disengaged from the healthcare system. Now I wonder whether digital solutions could have helped me have a better experience.

How technology helps me with my MS

I use technology for many things relating to my MS and the biggest emphasis is on information and knowledge. When I was diagnosed with MS, I gathered enough literature to fill a bookshelf.

Now, the majority of my information needs are met digitally. I have access to a wider variety of digital information, via the internet, smart devices and patient portals. I’m more informed and can make shared decisions with my healthcare team. The next step is that I want to be able to more easily share my health records with all my doctors, because I’m not just my MS.

CLICK HERE TO FIND OUT HOW TRISHNA USES TECHNOLOGY TO SUPPORT THE MANAGEMENT OF HER MS! 

 

Why I Became a Patient Advocate

Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, professional skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I made improvements to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Cancer is a black box few people understand unless they’ve had cancer themselves. We need to bring to light the unseen needs of cancer patients to empower those who care to address them. Through writing, speaking, and the use of new technologies, my objective is to reveal the human experience of cancer and help improve the patient experience for all cancer patients.

I am thrilled to be joining the Lyfebulb community as Cancer Ambassador and look forward to meeting many of you, online and offline.

This article was originally published on my blog at sylvieleotin.com.

Twitter: @sleotin

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