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The questions you meant to ask tends to surface on the drive home, after the door has closed and the next visit is three months out.
This guide gathers the questions in one place, grouped by topic, so you can find the ones that fit and mark them before you go. It works whether you have a diagnosis already or are still trying to get someone to look.
Part One, understand where you stand. Questions about what is being considered and what it rests on, what the testing can and cannot tell you, and what part your environment may be playing. Includes a note on which tests insurance tends not to cover.
Part Two, shape your care. Questions about treatment goals, what is essential versus optional, side effects, and pacing a day around activity and rest. Also covers how to ask for mental health support without your physical symptoms getting set aside.
Part Three, partner and plan ahead. Questions about coordinating between providers, what to expect over the next few months, when to seek urgent care, and how to get a diagnosis and its functional impact documented for accommodations, disability, insurance, and legal protection.
The guide also includes a page for the appointment that does not go well, a one-page checklist of every question to bring with you, and a resource page near the front listing where to go for things a question cannot hold.
Take what fits and leave the rest. Nine sections, and nobody is expected to use all of them.
This guide was developed from the experiences of members of our community and our own story.
This guide is educational. Malachi's Message Foundation does not diagnose or treat, and nothing here replaces professional medical advice.
Free to download, available upon check-out. Print it at home.
The questions you meant to ask tends to surface on the drive home, after the door has closed and the next visit is three months out.
This guide gathers the questions in one place, grouped by topic, so you can find the ones that fit and mark them before you go. It works whether you have a diagnosis already or are still trying to get someone to look.
Part One, understand where you stand. Questions about what is being considered and what it rests on, what the testing can and cannot tell you, and what part your environment may be playing. Includes a note on which tests insurance tends not to cover.
Part Two, shape your care. Questions about treatment goals, what is essential versus optional, side effects, and pacing a day around activity and rest. Also covers how to ask for mental health support without your physical symptoms getting set aside.
Part Three, partner and plan ahead. Questions about coordinating between providers, what to expect over the next few months, when to seek urgent care, and how to get a diagnosis and its functional impact documented for accommodations, disability, insurance, and legal protection.
The guide also includes a page for the appointment that does not go well, a one-page checklist of every question to bring with you, and a resource page near the front listing where to go for things a question cannot hold.
Take what fits and leave the rest. Nine sections, and nobody is expected to use all of them.
This guide was developed from the experiences of members of our community and our own story.
This guide is educational. Malachi's Message Foundation does not diagnose or treat, and nothing here replaces professional medical advice.
Free to download, available upon check-out. Print it at home.