Updated: Mar 20
What do I do to help others, but also help myself?
Global Genes is a non profit organization that helps those who are fighting rare diseases. There are a lot of helpful resources offered but one of the things Global Genes does (the reason I took such an interest in this advocacy specifically) is pair someone who has a rare disease with a new physician in hopes of helping the physician understand how to approach/treat one with a rare disease as they start their career in the medical field. This is long overdue!
You can image that patients with rare diseases are often completely frustrated and deflated trying to contend with a confusing illness but even more so if the person treating them is not doing their part to be educated, compassionate and attentive.
Because I can relate, I volunteered to be matched with a medical student, in hopes of making a difference in doctor/patient relationships. I had a wonderful experience that came at a crucial time, not just in my journey but also in the journey of someone dear to me who passed away unexpectedly, prematurely (age 22), and unnecessarily due to negligence on the part of his medical team. The young student that I interacted with was phenomenal! He was compassionate, interested, and determined to affect change. He was stunned and disappointed by the consistency of negative experiences that he was hearing in the voices of rare patients.
As important as contributing positively to other is, we also need to help ourselves. One thing I would like to mention is that we, as patients, also have a role in how our visits go. Sitting in on a Zoom meeting, I heard a lot of people echo the same concerns...one being that doctors do not spend an adequate amount of time with them and they also do not listen. I know this to be true. What can WE do to help minimize this? Be prepared!
A physician's time is precious, as is ours. Neither of us want our time wasted. There are some things we, as patients, can do to contribute to the appointment in a positive and productive way. Here are some ideas I heard today that may prove helpful:
1) Make a list of key points, using bullet format.
2) If allowed, email a list of questions and concerns to the nurse ahead of time.
3) Keep an organized medical journal.
4) Anticipate that not every concern will be addressed in that appointment so prioritize them and be prepared to ask for a follow-up to address your remaining questions (or ask for other resources).
5) Use your patient portal and messaging system.
6) Demonstrate to your healthcare professional that you are a willing and active participant in your own healing. I strongly feel that this will help validate you and encourage your provider.
I added #6, an unusual idea but very important...I personally have spoken with and been discouraged by several with chronic illness who reply to helpful suggestions with, "I can't because...". If the perception is that nothing will work no matter what is offered, your provider may be more likely to give up. For example, if they say "You need to start by changing your diet and running 2 miles a day.", you might respond with, "My illness prevents me from running but I will certainly clean up my diet and start walking more often." Keep an eye out for ways you CAN improve your situation, even if it's something small.
These practices may or may not help depending on the healthcare provider but putting some of them into practice will hopefully create a better experience for YOU...if it doesn't, it may be time for a new doctor...as exhausting as that process is!
I also really appreciated the chatter about self-autonomy and the ideas that were put forth on how to help ourselves:
-Journal your hopes, what IS good, what you DO have, what you CAN do. Also feel free to voice fears and make a list of needs. ♥️ Whatever you do...never give up!