8 Tips For Self-Advocacy

Being your own health advocate is one of the most important things you can do to receive the best care available, especially as pulmonary fibrosis patient. To some of you, self-advocacy may be scary and/or uncomfortable. Whether that is the case or not, here are some tips that can help you advocate for better care.


  1. Do Your Research 

Knowledge is power. Ideally, you should be walking into your doctor’s office as prepared as you can be.

If you haven’t already, you should familiarize yourself with the disease you are dealing with. The CPFF website is a great resource for that. If you look for information elsewhere, be mindful that there is a lot of misinformation out there.

Another thing you should familiarize yourself with is the financial support you can receive. Each province has their own policies concerning the reimbursement of PF treatments and oxygen therapy. If you are Indigenous or a Veteran, there are federal programs that may apply to you as well. If you have a private insurance, find out what they cover, as some of the government policies have limitations in their coverage.

If your condition is limiting your ability to do your own research, don’t be afraid to reach out to your caregiver, a friend or a family member to help you do so.

There is not enough time during a doctor’s appointment to get a full picture of what you are dealing with if you’re unprepared, and that’s why it pays to do your homework. That being said, this brings us the next point…


  1. Prepare Questions for Your Visit

There’s probably some, or many, questions that popped to your mind as you were researching. Perhaps there’s some information that wasn’t clear, or you simply want to confirm something what you read or heard. Maybe you simply weren’t able to find a satisfying answer to one of your concerns.

Regardless of how the question came to mind, write them all down (or have someone write them down for you) and bring them to your next appointment.

And remember, there are no stupid questions. As Carl Sagan once said, “There are naïve questions, tedious questions, ill-phrased questions, questions put after inadequate self-criticism. But every question is a cry to understand the world. There is no such thing as a dumb question”.


  1. Get to your appointment early and bring someone with you 

If at all possible, arrive early to ensure you’re calm and composed when the time comes to talk to your doctor. This can help you center yourself so you feel comfortable and confident bringing up questions and concerns as they come along.

Additionally, bringing someone close to you, whether a caregiver, a friend or a family member, can be great for moral support.

However, not everyone is fortunate to have someone in their lives who can help out. If that’s the case, try finding a patient advocate that can accompany you. They are trained professionals, or volunteers, who come along to appointments and help to ensure you get the quality healthcare that you deserve.


  1. Clearly communicate what you are experiencing 

Whether you are experiencing new or worsening symptoms, or side-effects to your medication, it is important that you give your doctor as many details as possible.

What are they? Where- and how long have you been experiencing them?

If you’re at all concerned about something, anything, don’t be afraid to bring it up. Your doctor is there to help you. Remember that you’re the expert about your own experiences, and confidently share anything you’ve found notable.


  1. Take notes (and ask for a copy of theirs) 

Taking notes during every appointment has many benefits. It can help you:

  • Keep track of what has been discussed.
  • Do research later.
  • Get a second opinion.

If your condition limits your ability to take notes, don’t be afraid to ask whomever accompanied you to help you do so.

You can also try asking the doctor to write down any relevant notes for you so you can have a copy. This includes next steps or copies of any test or scan results.


  1. Be assertive, confident and persistent 

You may disagree with something your doctor is saying. You may have a question that still hasn’t been answered. You may have a concern that still hasn’t been addressed.

Whichever it is, remember that your doctor is there for you. Should you feel concerned about anything, speak up. Reiterate your concern or question. Do so in a clear, calm and firm manner until it is addressed. It may be uncomfortable, but it is necessary.

You may have all the right questions, but sometimes, unless you’re assertive, confident and persistent, you may not get all the answers.


  1. Confirm the next steps with your doctor 

Ideally, at the end of every appointment you should take a moment to summarize what you have learned and what you understand the next steps to be. This simple exercise will allow you to confirm and you and your doctor are on the same page.

If anything was misunderstood, this is the moment where it gets clarified. You’d be surprised how often that happens.


  1. Get emotional support/call for backup 

Last but not least, while you are living your life, in between appointments, it is important to have a support network. Beyond your caregiver and your doctor, meeting with a support group and/or consulting a mental health professionals can go a long way in keeping you mentally and emotionally fit.


Canadian Pulmonary Fibrosis Foundation does not provide medical advice, diagnosis or treatment. Our website is strictly information and news about the disease. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.