#1: Do Your Research
One of the best strategies for having productive conversations with your specialist is to do your own research before your appointment. In this day and age, it’s vital to be your own advocate. When you get informed about your condition, you get to be a driver in your healthcare plan and better understand what your doctor is telling you and why. One caveat here: when you’re first diagnosed, it can be easy to fall down the rabbit hole. For conditions like Crohn’s disease or multiple sclerosis, no two cases are ever the same. Stick to the basics — what your condition is and what to expect — until you get a chance to have an initial discussion with your doctor.
#2: Come with Focused Questions and Take Notes
When you’re first diagnosed, you may have a million questions running through your head, or you may be so overwhelmed you can’t think of any questions at all. (That’s OK too!) Take some time before your appointment to compile a list of important questions. This can both calm your mind and help you be more prepared. Here are some good starting points:
- What symptoms are normal, and when should I call you?
- How can I ease normal symptoms and flare-ups?
- What sort of information should I be tracking to discuss at our appointments?
- What treatments are available, and what are the pros and cons of each?
- How often should we schedule appointments to check in?
- What other resources would you recommend?
During your appointment, make sure you take notes on the answers. This takes the pressure off to remember everything afterwards. Taking notes allows you to review and digest them later, when the pressure’s off.
#3: Bring Your Advocate With You
Do you get shy or intimidated during your appointments? Bring a friend or family member who can and will advocate for you. Go over what you want to accomplish at the appointment with your advocate beforehand, so they can take the wheel if necessary. Simply having an extra person to think through the next question or discussion point while you are interacting with your doctor or nurse ensures you get the most out of the limited time you have in the clinic. And having a trusted friend and/or loved one by your side makes just about anything a bit easier.
Furthermore, if your condition requires ongoing infusion or injection treatment like a bi-weekly Xolair injection for allergic asthma or a Remicade infusion to treat ulcerative colitis, some outpatient infusion centers can accommodate guests, including family, friends and even children. These can be great opportunities for you and your advocate to continue learning from the experiences of doctors, nurse practitioners, nurses, and others in your immediate care team.
#4: Share Knowledge with Chronic Illness Communities and Support Groups
Whether you find your community online or in person, talking with others with similar challenges can help you discern what’s normal and what’s not to better focus the issues and concerns you want to bring up directly with your healthcare provider. On the flip side, if you’re not sure about something your doctor told you or you need more clarification or explanation, you can ask the community and often times get real-time feedback. These communities can also raise your awareness about new research or treatments so you can discuss them with your doctor at your next appointment. With the rise of social media, the collective knowledge online has vastly improved the once daunting process to connect with and learn from others with your condition and at your same stage of life. Get connected!
#5: Get a Second Opinion
Having a positive relationship with your doctor is critical to your personal success, and it’s absolutely OK to get a second opinion from another doctor. Don’t be afraid to ask your communities for doctor recommendations. Similarly, even if you’re happy with your doctor, don’t be afraid to ask them for potential options for supplementary care. You have a choice in your healthcare decisions. You are empowered! Whether that means alternative treatment options with healthcare professionals such as a dietitian, psychologist, or physical therapist, or even moving your site of care to another option like an infusion center, you deserve a healthcare team devoted to making you feel better.