Jennifer Powell, an MS patient advocate, shares why patients are the drivers of their care and encourages open conversations with providers, seeking support, and advocating to feel heard. Read her column, “Silver Linings.”
Transcript
It’s critical to know that we are the driver of our care. Only we can change and modify that. It’s also very difficult to talk to a healthcare provider about an undesired circumstance, such as not getting your needs met. I still go through that. So if you’re going through that — know it’s normal.
I liken it to a ship where the captain of this ship, if that ship is not running well, and you being the ship, we really need to modify how that’s going.
First of all, have a conversation with your provider. Second of all, get the support you need on how to best tackle this information or how this subject goes with like your local support group or someone you know that might be going through that.
If you don’t know anyone going through that, reach out to a local support group or go to your online resources to look for ways to manage this.
Also, don’t be afraid to seek another neurologist’s opinion. It only works if you’re going to work at it.
And what that looks like is you taking the mantle of your healthcare and responsibility and really moving forward with what you want. Your own advocacy is going to be the change maker, and it is hard. So reach out for resources that can support you.
If you are in a hospital setting or a doctor’s setting and you don’t feel like you’re being heard, reach out to the ombudsman. Reach out to the care manager at that office and make sure that you are feeling heard and that even if your doctor disagrees with your path, that he fully comprehends what you want.
