Advocating for yourself as you learn about your newly diagnosed disease

by Manley Lavender

Upon learning from my neuromuscular specialist, I have something called myasthenia gravis and periphery neuropathy, I was anxiously wanting messages regarding these two conditions. However, once I received them, I was unaware of how to proceed. I went into my appointment anticipating some form of diagnosis. Upon leaving my appointment, I had been given a sense of relief and a new sense of uncertainty.

The concept of advocating for oneself, with regards to your health, is challenging for many people. When people go into an appointment, they are stressed, unwell, relying on medical professionals to give them absolutes, guarantees, regarding the information gathered, based on diagnosis, testing etc. Unless you can take proper notes, listen with intent and clarity, as well as understand your medical diagnosis, it is difficult for patients to come away from their appointment with a full understanding of all the details. In addition, what is required of their caregiver, family members and what community supports are available.

Depending on your age when you were diagnosed, you may have acquired some of the lifelong career related skills beneficial to you, when advocating for yourself. Skills like: time management/scheduling appointments; balancing work, life and family; mental mapping; problem solving; critical thinking; analyzing statistics data, to name a few, will enable you to better manage everything expected of you and your caregiver. Furthermore, depending on your level of knowledge regarding our medical system in Canada and the relationship of general practitioners, specialists, other medical practitioners and other support services this will determine how effective you are with navigating your medical journey.

Patients and caregivers are encouraged to prepared for your appointment/meeting, kind of like an interview. By doing research you can understand some of your doctors background, expertise and maybe even their bedside manner. So, before your first meeting or appointment, you are prepared for who you're speaking with. This can help you interact better and be able to reliably gain critical information you need to develop your medical plan.

Many doctors will appreciate this extra effort you put in, it will make their job of explaining your medical diagnosis to you easier. You are also encouraged to take notes in with you, to journal your conversation, and with permission audiotape your conversation, so you can play it back later. We all know, you may be stressed or anxious, and this doesn't help you to be at your best. Consequently, this can inhibit your capacity to understand and processing everything being explained to you.

This is not a negative reflection of your ability to listen, it simply demonstrates how much thought you and your caregiver have given to your appointment and how important it is to you. Your doctor will further appreciate your efforts, and hopefully match your level of commitment, and excel in their own. As well, you may want to rehearse/practice what type of questions you are wanting to ask your doctor. Depending on your level of your anxiety, you may want to drive by your medical centre beforehand, or do a walk through, so you understand the size of the building, where in the building your appointment is, and how much effort is required for you to arrive on time. This is an example of mental mapping, by rehearsing your activity prior to the actual experience, you then can expect a more constructive conclusion. We all want a positive result from an appointment, interaction with a patient caregiver or medical team. As they say, the more positive effort someone puts into an action usually results in a more positive outcome.