Going to the doctor’s office, visiting a specialist, or visiting the ER can be very scary ordeals, but they don’t have to be a waste of time.

There are so many patient visits that result with an unfortunate turn of events, all of which can be avoided. Most of us obey our doctors and go to scheduled visits because we are asked to, but how can you get the most out of each visit?

Know your illness, whether it be a regular known ailment, a form of chronic pain, or suffering from a rare disease – is key to understanding your health care visits. I’ve gone to far too many health care visitations to come to the understand that only a fraction of them have been absolutely necessary (meaning that they truly helped in some way to move forward with my potential cure, or to simply add something of value to increase my quality of life.)

Please in no way think I’m asking you to not go to your scheduled visits. What I’m suggesting is that you get the answers you need to make an informed decision WITH your regular MD, specialist, or ER doctor. When you understand your illness, you can ask the right questions and become a part of your health, not just a spectator.

How to Become a Patient Advocate for your Own Health Care:

Here are some simple rules to follow prior to seeing your specialists. Please grab a pen & paper, or print this list out because it will help you to discover options you need for your next scheduled meeting. Each health care appointment is always designed to lead you to a certain outcome. By staying ahead of the game, and understanding your needs, you will have the keys necessary to discuss the right options for you with your doctor.

Know Your Illness, Inside and Out:

  • Be proactive in your research, not reactive
  • Read about all medications you take, write down known symptoms or reactions, warning labels and other interactions
  • Keep a journal of each visit (Download the Intake.me PDF patient checklist)
  • Journal all symptoms you experience, no matter how small (time / date / feeling / area affected)
  • Read up on well respected websites about your illness, symptoms, and treatments
  • Keep up to date with news, but don’t forget today’s discoveries are potential treatments in the future
  • Join a discussion group to get feedback and tips from other like-minded individuals
  • Join the ePatient 101 course from Intake.me (right away)
  • Ask your doctor or specialists for booklets, or print-outs on your ailment(s)

If you don’t have the energy to do this for yourself, since it can be a little daunting at first, ask a family member of friend and create a “study group” together. The more people who are proactive in your care, the better the results, and the chances of discovering new ideas will increase dramatically.

Always remember that finding the “next step” for your recovery is like being a well-trained detective. Doctors have extensive training on how to discover new ideas, how to research new treatments, and how to prescribe the appropriate medication. Behind all of that training is a human being just like you and me who’s trying to help your recovery the best they can. You can help with those discoveries through the power of knowledge.

Take it from me, do NOT self-diagnose yourself!

For the longest time I would research every single symptom I was having, connecting them to different illnesses and a multitude of wrongful conditions. One time I honestly thought I had Kidney Disease, due to the fact that I had only one kidney and my symptoms all pointed towards Kidney Disease. It scared me to death, I even prayed that it wasn’t true. I had myself all worked up, even had friends over to tell them the bad news. Now don’t get me wrong, it DID turn out that I had an infection in my body, but I wasn’t dying of kidney failure. Phew – what a relief. Don’t become the internet-dx specialists.

The Key is Knowing Thyself:

See the key is understanding your chronic illness, or rare disease better, not so you can self-diagnose yourself, but so that the next time you have a scheduled visit, you are able to have an educated discussion with your doctor. Being your own Patient Ambassador takes time and effort. Being your own Patient Advocate takes dedication, patience, and then more patience, but one day you’ll start seeing better results from all your hospital visits, big or small.

I hope that you live a long and fulfilling life. Life is so precious, it’s amazing how some of us don’t find out how precious life truly is, until it’s too late and we can no longer do small things we once loved anymore. Take it from me (I suffer from multiple rare diseases) becoming my own Patient Advocate has been the best thing I’ve ever done for myself and for my future health care.

All the best to your research.


Martin R. Lemieux

Martin R. Lemieux

Founder & President at Clots Matter
Martin R. Lemieux is a patient care advocate and rare disease ambassador. Martin has suffered for over 23 years with multiple rare vascular diseases, including; Factor V Leiden (Blood Clotting Hereditary Illness), Livedoid Vasculopathy, Chronic Venous Ulcers and PTS (Post Thrombotic Syndrome).

Martin is currently the Patient Ambassador for Thrombosis Canada and also the Founder & President of Clots Matter (www.ClotsMatter.ca) - Building Canadian Patient Advocates, One Clot Story at a Time.

You can reach Martin online through twitter using @Martin_Lemieux or @ClotsMatter.
Martin R. Lemieux