Defining Normal and Not Allowing Your Disease to Define You

One of the things that surprised me when I first became a patient advocate for Sanguine BioSciences was how “normal” all of my patients were. Many of the diseases we work with on a daily basis have names that sound scary, like Parkinson’s, Alzheimer’s, and Lupus. Most of us picture these people with debilitating diseases that affect every part of their lives. But after meeting so many people with these “scary” diseases I realized that illness does not define my patients. While they must deal with the hardships of hospitalization, constant pain or discomfort, and many more symptoms caused by the medications that are attempting to control their disease; they also are just regular people living their lives, just like the rest of us.

The more I talk to people and hear about the chemotherapy they had last year, I also hear about how their grandkids are doing in soccer this season. Most of my patients few outwards signs of illness, and they like to keep it that way. So I may never have realized before how many people I meet on the street that have a daily inward struggle controlling their diseases.  But when I walk into a patient’s home, they allow the mask to come off. They get to talk to someone who wants to listen about their aches and pains and chat about what happened last night on Dancing With the Stars. I love when my patients feel comfortable enough to talk to me about everything. We can chat about their disappointing lab results they got back this week and the fun vacations they have planned for next month with a special someone. I feel lucky to be able to get to know my patients as individual people, not just another statistic.

The thing I love about working for Sanguine is that we are not here to be nameless, faceless “researchers” and we don’t think that our patients should only be “subjects.” We are all here to try and make a difference; in whatever way we can. And my way of helping is proving that my patients are real people, not just a set of lab results.