Guidebook for Navigating New Chronic Illness or Disability: Part 3 Getting What You Need From Your Doctors

This post is the third part of my series, “Guidebook for Navigating New Chronic Illness or Disability.”

Read the previous parts here:

Part 1: You Realize You Can’t Work As Much or At All Anymore
Part 2: When You Need Emotional or Mental Health Help

Getting What You Need From Your Doctors

When you’re adjusting to a new set of physical concerns, a good doctor can be a necessary ally, problem-solver, and guide. Such a doctor might not have answers to all your questions, and if you have an undiagnosed chronic illness, the doctor may take a while to fully understand what’s going on for you. What’s important, though, is that you generally feel good about your relationship with your doctor, and that you feel your doctor is actively helping you.

If you don’t feel good about how your doctor visits are going, read on for my suggestions about tools you can use to improve the visits. I also have included some suggestions for next steps you might take if you decide it’s time for a new doctor or healthcare team.

 

Agenda Setting

These days, most doctors are allotted minimal time for each patient visit. Sometimes, it’s hard to find the time to let your doctor know about all of your physical concerns. This is especially true if your doctor tends to be the one driving the conversation.

It can help if you bring a list of topics you’d like to cover in your visit. Try to identify your top priorities, in case you don’t get to your whole list. If you feel comfortable doing so, you can consider sharing your list with your doctor, so you can share responsibility for setting your visit agenda. This post includes more about how you can help set the agenda for your doctors’ visits.

 

Asserting Yourself

It can be deeply upsetting when you aren’t getting what you need from your doctor. Sometimes, it can be tempting to yell and make a scene. Other times, it can be tempting to swallow your dissatisfaction, to play the role of “good patient” and to avoid looking like a complainer. Whether you yell or silence yourself, you will probably only get what you need a small portion of the time, and you might have a hard time being taken seriously. There is a third option: asserting yourself. For many, this style of communication is unfamiliar, but it is remarkably effective. This article is a guide for learning about and practicing assertion.

Be pragmatic about who you voice your concerns to; if you are more comfortable with another member of your healthcare team, you might get traction if you first raise your concerns with that person.

 

Patient Advocates

Another approach I would suggest to help you get your point across would be to bring someone else with you to your appointments. Consider bringing a professional patient advocate, or a trusted family member or friend. This person could help make sure that your healthcare team understands your concerns. Some healthcare facilities offer patient advocates on-demand, so consider investigating whether your doctor’s office does.

 

Letters

Sometimes, no matter how much you have tried to express your concerns, you can leave your doctor’s appointment feeling frustrated and misunderstood. Writing a letter about your concerns can be cathartic. If you think that the letter might be useful for getting your points heard, consider sending it. Read this for an example of a letter that helped me get my point across to my occupational therapist.

 

Changing doctors

If you still aren’t getting what you need from your doctor, it might be time to search for a new doctor. To find a good doctor, you can get recommendations from trusted healthcare providers or from friends or family. Also, there are an increasing number of websites that include information about specific doctors and their patients’ levels of satisfaction.

Not everyone is lucky enough to have a choice about which doctor(s) they see. If you do have that choice, remember that you are under no obligation to stick with your current doctor. You are entitled to a second opinion, and if you search around, you just might find the right doctor for you. I wish you luck.