Shalana “Shay” Jordan explains why self-advocacy and staying informed can help people with immune thrombocytopenia communicate more effectively with their healthcare teams and make confident care decisions. Read her column, “One Drop at a Time.”
Transcript
So I think it’s super important that you must be your own advocate. You know, your doctor is not the person who’s sick, you are.
Your doctor is not living through the issues that you have every day, you are. So it’s important that you’re your own advocate, they don’t have a clue how much you’re suffering or not suffering.
What’s working, what’s not working. Unless you tell them, you know, it’s not that being confrontational, it’s just about having honest, clear discussions with your medical team. You should be able to do that. It’s crucial. It’s crucial to you continuing your life.
And I think the biggest thing is, not only being your own advocate, but also being an active learner in your own disease. Because a lot of these diseases are very rare. You don’t see them often, and a lot of times these doctors don’t see them often either.
One of my other diseases was compared to multiple personality disorder. Now dissociative disorder. Most doctors will not ever see that in their lifetime. And that’s how several of my diseases are.
So as the sick person, it’s been so important for me to learn about this disease and research and continue learning because advances change, treatments change, all that kind of thing. So you’ve got to be an active learner and an advocate for yourself.
