This article presents an OPINION and is IN NO WAY intended to serve as medical advice. The writer does not possess a medical degree and is not a clinician.
Part of my life before I earned my PhD involved serving as a health educator in North Carolina. Armed with a master’s degree and fancy certification, I helped people learn ways to communicate with their providers about what they could expect following diagnosis with a chronic disease. For example, it is common to develop “checklists” of questions that are important for patients to ask their providers when they discuss a diagnosis.
A good practice for your healthcare visit is to bring a notepad and a pen or pencil with you so you can take notes as needed. (Note: This practice is especially helpful in the age of COVID-19, when we can’t bring others into the office with us.) I also recommend that you bring a list of questions you have ahead of time with you. It’s common during provider visits to forget what we wanted to ask or to feel overwhelmed and anxious when trying to process what the provider tells us.
If you are diagnosed with a new condition or given more information about one you are already living with, you will want critical information about your condition and how it will impact your life. There are some “standard” questions you should ask, and sometimes it can be difficult to recall those questions in the heat of the moment.
Unsatisfied with other checklists I’ve seen, I developed my own for mental illness. Take what you like from it and add your own to come up with a checklist that works for you!
- What condition do I have, and are there subtypes of this disease? If so, which subtype do you believe I have?
- Sometimes your doctor may diagnose you with a given type of your disease or leave that descriptor unspecified, based on your symptoms. For example, there are different types of bipolar disorder, characterized by the nature of the highs and lows the sufferers experience. Further, “anxiety” isn’t a one-size-fits-all diagnosis. There are many types, like OCD, PTSD, and panic disorder.
- What data brought you to this conclusion? (How do we know this is what I have?)
- What (symptoms or outcomes) can I expect while living with this disease? (What is this disease like? What do people with my condition go through or experience? Might it impact my lifespan?)
- What might have caused my condition? (Remember that disease does not develop in a vacuum. There are genetic, biological, environmental, behavioral, and/or social etiological factors.)
- Is this condition chronic? Will I be handling it for the rest of my life, or is it something that will go away with careful adherence to treatment? If the latter, how long does it usually take to go away?
- What will I need to do to control my symptoms? (Lifestyle changes may be necessary to help minimize your distress. For example, some people benefit from yoga or meditation. You may also need psychotherapy or medication.)
- If medication is recommended, how do I take it (day? night? with a meal?)? What happens if I don’t take my meds? What happens if I take too much?
- What are the different treatment options that are available to me? (Note that this question reaches beyond simply, “What meds do I have to take?”) What is the gold standard treatment? Are any homeopathic treatments recommended? What do we know and not know about this medication or practice?
- What side-effects can I expect from my medicine? How will I know if these side-effects are problematic (e.g., especially bad) versus what anyone can expect? Will they go away over time?
- What can I reasonably expect from my treatment? (Will my condition go into remission?)
- What effects do both the disease and the treatment have on my body over time? (For example, lithium can hurt kidney function over time. What are the odds?)
- Having this information could help you mitigate/reduce your risk. You may also want to know what percent of people benefit from treatment. Sometimes there is no magical solution for everyone, and it takes a little trial and error.
- Is there anything I should NOT do with my condition? (Examples may include drinking alcohol, staying up all night, exposing yourself to stress, taking aspirin or NSAIDs like Advil or Aleve, and being sedentary.)
- Are you the right person to handle my treatment? [Don’t be afraid to ask doctors whether they are the best fit–and make that judgment yourself, too! Sometimes, generalists (internists, family medicine doctors) will be more comfortable referring you to a psychiatrist, and even some psychiatrists may recommend you see someone else who specializes in treating your specific condition.]
- What are my next steps? (You should leave your doctor’s office with an explicit plan for what you need to do next to care for your condition.)
- How regularly will I need to engage with you?
- When do I call you? And when do I call 911–what is the threshold for what constitutes an “emergency,” and how do I handle one?
Never be afraid to ask questions of your provider. After all, we’re talking about your health, which is one of the most precious commodities you have! Also, do not be afraid to get a second opinion before you settle on a treatment plan, especially if you are uncomfortable or uncertain about the diagnosis you were given.
I hope this list is useful to you as you talk to your providers. Take what is useful to you and forget that which is not. This list is simply one more tool you have in your arsenal for fighting mental illness. I wish you the best in your journey.
–Jaimie C. Hunter, PhD, MPH
Jaimie Writes 