Heather Shorten, of Cleveland, Ohio, was diagnosed with late-onset Pompe disease in 2015. She serves as the executive director of the Pompe Alliance. She uses her experience as a social worker to share strategies on how to approach a healthcare team when concerned about treatment decisions.

I’m a social worker and that was my job — was saying, for my client, “This isn’t going to work,” and advocating for my client. So for me, I’m able to say that to my doctor: “I don’t think that’s going to work for me. I’m not doing that. I don’t like the idea of that. Can we talk about something else?”

I know it’s not easy for everybody. One of the things that I have done — because sometimes it’s hard — sometimes it is hard when I go to the doctor and they give me hard news to hear. So I take somebody with me a lot of times — my mom, my sister, my dad. And when I can’t speak for myself, they speak for me.

I think taking a second person with you to doctor’s appointments can be invaluable because sometimes I leave the appointment and I can’t remember what the doctor said. Or, like I just said, the doctor may say to me something that is hard for me to hear and then I’m just shutting down.

But I think having a second person with you when you go see your doctor is important.

I also think sometimes talking to the nurses is easier than talking to the doctor. So if your doctor has a nurse, maybe talking to your nurse about [how] you and the doctor had this conversation and it’s just something you don’t think it’s gonna work for you — that might be an easier conversation to have than having with the doctor.

Also, hospitals have social workers and case managers on staff. They might be able to help you have a conversation with your doctor or nurse that would help you then to come to an agreement on something that is workable for you.