Self-Advocacy: Navigating Through Uncharted Territory When You Get Sick

If you have ever had to experience the healthcare system in this country you know it’s very complex. Most people refer to it as the Canadian Healthcare System, but what people don’t realize is that Canada has 15 different healthcare systems representing every province and territory. This means that federally The Canada Health Act represents the overarching system in the country, but how each system operates is determined provincially. Confused yet? You should be!

We try our best to stay out of this uncharted territory, but if we get sick, we don’t have a choice but to face the storm head on.

I’m very fortunate to be well-versed in advocacy through my career. My background is in politics, but my passion is helping people and it’s through melding the two I found myself developing the advocacy program at Rethink Breast Cancer.

Armed with advocacy knowledge, I found myself in this unchartered territory in 2008 when I became very sick, and later diagnosed with auto-immune hepatitis. This type of hepatitis (which is rare) is when your immune system mistakes an area of your body as an invader and decides to attack it. In my case, my immune system chose my liver. I presented with flu-like symptoms and it wasn’t until almost 2 weeks later when my skin and eyes turned a lovely shade of yellow that I decided that maybe it wasn’t the flu.

And just like that, without warning, I was a patient. There are a few different types of patients: the persistent, won’t take no for an answer; the neutral, when push comes to shove they will speak up; and the compliant patient, who doesn’t like to rock the boat. I fell somewhere between persistent and neutral .

Regardless of what type of patient you are, navigating the healthcare system is overwhelming!

Where do you even start? It’s not like you plan to get sick and you have the luxury of researching your illness and your course of treatment prior to getting there.

I’m here to give you some advice and hopefully make your experience a little easier through self-advocacy. Self-advocacy is the ability to advocate on behalf of yourself to create change in your life. This change or changes become important when you are trying to get the best care possible.

Listen to your body. I figured I was young, active and healthy and that I couldn’t get sick. I was wrong! I didn’t want to see a doctor because I thought it would be a waste of everyone’s time. As a tactic to lure me to a doctor, my husband bet me if I could eat a Big Mac meal and keep it down, we wouldn’t go to the hospital. The very thought of eating a Big Mac made my stomach turn! That’s when I found myself at the head of the line being triaged at our hospital. I lost the bet…  I was sick.

Don’t ignore symptoms! When something is not quite right see your doctor. No one knows your body better than yourself. Give as much information to your doctor as possible. No detail is too small to mention. If it’s easier, write them down before your appointment and talk them through with your spouse, partner, or family member to make sure you don’t miss anything. My husband was the one to notice I was jaundice, not me; I was too busy making excuses for my illness.

Know your rights. Even though you’re a patient, you still have rights. The internet is so overwhelming that it’s often hard to filter out the helpful sites from the not so helpful sites. Rethink Breast Cancer has developed a set of 10 care guidelines for newly diagnosed women. The guidelines are meant to notify young women of the care they should be receiving and to inform health care professionals of the unique issues that young women diagnosed face. Personally, I think these guidelines can be adapted to any illness and used to help you when speaking with your doctor.

Having someone on the ‘inside’ is also helpful. Depending on where you are treated there may be a nurse/patient navigator who is there to guide you through your cancer journey. This person may be able to help with setting up appointments, answer your questions, or just be there to listen. Sometimes you are referred to a navigator and sometimes the onus is on you to seek one out. At your first appointment, ask if there is a navigator available to assist you with questions you may have or in making difficult treatment choices.  And speaking of questions…

There are no dumb questions! What I found helpful when going through my treatment was writing down all my questions as they popped into my head. A day or so before my appointment with my specialist I would go over the questions with my husband to make sure I wasn’t missing anything.

I know some patients feel like they are taking up too much of the doctor’s time if they have a laundry list of questions to ask. You may want to confirm with your doctor at the beginning of your appointment how much time you have. Let the doctor know that you would like to take 10 minutes at the end of the appointment to answer any questions you have that may not be covered during the appointment.

Bring a friend or family member to take notes because it’s really hard to listen and take notes at the same time.

If you have any unanswered questions or follow-up ask your doctor if you can email them or set up a follow-up by telephone. Many physicians are happy to use email as a means of communication.

You are not alone. Even though you may feel like you are the only person in the world that is going through a crappy time, you are not alone. There are a number of people out there that understand exactly how you feel right now.

There are various supports systems that are tailored to what you need at this moment. Let’s face it, some days you don’t feel like sharing, so reading a blog might be just what you need or posting a question about your treatment plan on a message board. Other times you may feel like picking yourself up off the couch and having some in-person interaction. Some ways to stay connected:

The Rethink Network and private Facebook group

• Rethink’s posts for young women living with breast cancer

• Rethink’s social media channels (Instagram, Facebook, and Twitter)

Pink Pearl Canada

Team Inspire

Young Adult Cancer Canada

For the Breast of Us

Remember: you are worth fighting for. Don’t ever feel that you are not entitled to having all the facts, asking all your questions, or sharing all of your concerns!

As Thomas Edison once said, “Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”

Written by former Rethink Advocacy Manager (2011 to 2017), Ashley MacIsaac-Butler

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