ePatients and Advocacy

By | Mon September 14, 2015

I define myself as an ePatient (engaged patient) – but mostly from the perspective of a patient who advocates for myself. Someone that seeks to understand my medical condition and ensure that I am getting the best care possible. I think of this as internal advocacy – or self-advocacy.

Another aspect of ePatient is that of advocating for others who share your condition. I think of this as external advocacy. Often, this is something that is expected of ePatients if they want to access ePatients rates (or scholarships) to attend medical conferences. You are only considered an ePatient if you do some form of external advocacy.

My blog also provides some level of external advocacy. It isn’t so much a direct form of supporting change, but rather, it tells a lived experience to help people better understand what it means to be living with breast cancer. That is a form of external advocacy, but it isn’t necessarily that active – it is more of a passive advocacy.

In the breast cancer world, I don’t really see myself as an external advocate. I’m not trying to change the system in any way. Mostly, I provide support for any women who reaches out to me. I share my story, in order to help other people better understand breast cancer.

Going through the process of diagnosis for celiac disease has made me want to advocate for change. I’m actually motivated to document my journey, but then to question the process. I want to make this process better. I want to change the way people are diagnosed, and the way people are treated. I want this disease to be better understood. Similar to breast cancer, it is an area where awareness got it all wrong. People are aware of the disease, they just don’t understand it. There are many parallels.

I’ve previously blogged about the double-edged sword with the gluten free fad and celiac disease. Because of the gluten free fad, more people know about celiac disease. But, because of the gluten free fad more people misunderstand what celiac disease is. They mistake it for the fad diet. They think that people who ask for gluten free meals are doing so for personal preference reasons. They think that a little cheating now and then will do no harm.

After a wonderful dinner the other night (ordered from the gluten free menu), I decided to order dessert. They didn’t have the gluten free chocolate cake that I wanted, so I opted for the sorbet. Unfortuantely, the sorbet came out with two chocolate wafer cakes embedded in it. I should have sent it back. Instead, I took them out, gave them to my friend, and ate the sorbet. Fortunately, I’m not yet that senstive to gluten. But still, there is a point to be made.

Tonight, I decided to order humus and veggies to go – so I’d have something decent I could eat on the plane tomorrow. After a much longer wait then I expected, it came out in a nice to go bag. Fortunately, I looked inside and discovered that dried bread crackers were dipped into the humus. I have decided that my advocacy now includes sending food back when it is contaminated. You see, I was really clear with the waiter that I needed everything to be gluten free. This is a good restaurant. They know better (that was the case before too). And so, I sent it back. I explained why. After another wait, I got a second batch (it turned out that one of the challenges they were having was finding fresh veggies to include in the humus and veggies platter – they eat a lot of potatoes in Northern Ireland, not so many other veggies).

So, I know have one way in which I will be an active advocate – and that is, if it says gluten free but it is not, then I shall send it back!

Leave a Reply