Erin Fortin is a rare disease patient advocate and PicnicHealth ambassador. She understands firsthand how difficult it can be to feel prepared for your doctor’s appointments. Over the years she’s developed a few best practices that have worked for her. She shares her story and tips below.

‍

Learn more about PicnicHealth’s PNH Research Program

‍

I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, three years ago. Every day is a new adventure living with a rare disease; some days I feel strong and empowered with my new lifestyle, and other days I am defeated and discouraged when I am not feeling well. Managing your fatigue, migraines, or brain fog symptoms can be difficult when you aren’t sure when the bad days are coming. I get it. I’m in the same boat! There are times I choose between listening to my body or getting things done that need to be completed, such as scheduling doctor appointments. Please, raise your hand if you’ve seen doctors more than your friends in the last few months or if you’ve had more appointment reminder cards in your wallet than any other type of card. I used to procrastinate scheduling and preparing for my appointments. However,  I’ve since realized along the way that these tasks relate directly to how I feel; the more productive my appointments are in discussing my care, the better I feel in the long run.

‍

Now, what do I mean when I say preparation for an appointment – shouldn’t you just show up and let the doctor do all the talking? Nope! Preparation is having a game plan of what questions you want answered and topics you want to discuss with your doctor. As the patient, you may not have a medical degree, but you are the one living with PNH every day. Don’t discount this experience and your knowledge of how the disease shows up for you. Preparation ensures that you don’t leave your appointment with any unanswered questions that arise day-to-day. Since we can’t plan when our unpredictable, symptom-filled days are coming – the ones where we have no motivation to prepare for our appointments, try to prepare ahead of time on your “good” days. Leaving the preparation until the morning of or even the day before can create unnecessary stress and may leave you forgetting specific things you wanted to discuss with your doctor.

Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:

‍

1. Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.
2. Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH related or not), hospital visits, lab work, etc. and keep them readily available in one place.
3. Keep a running list of questions between appointments. Whenever a question pops in your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print it out so you can write the answers next to each question as you ask your doctor.
4. Converse with your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.
5. Don’t be intimated. Your doctor may have an extensive education and multiple degrees, but don’t be nervous around them, they are humans too and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care.

‍

Are there any tips that stood out to you that you haven’t thought of before? Do you have tips that work for you that aren’t listed? Share them below in the comments section. Advice can be used on a trial-and-error system, as you learn what works best for you. Learning tips and tricks from other patients, especially when they can advise what has and hasn’t worked for them is the fastest way to incorporate new techniques in making your life easier with PNH. So go out there and prepare for your next doctor’s appointment; your future self will thank you for having everything ready to go!

‍

Learn More About PicnicHealth’s PNH Research Program

Explore PicnicHealth’s Other Research Programs