First, you are not a victim, you are a Survivor, some say we are a Warrior’s.
You are someone who others cannot understand until they become who you are.
This information is meant to empower you and help you be more independent in your medical journey to wellness.
- Self advocacy is asking for what you need directly, in a assertive manner while still respecting others. The only time you have a problem is when you don’t get what you want or need and do not feel respected in return.
- Find someone with a voice who has nothing to gain but can change your circumstances or help steer you in the right direction.
- Know your illness and how it effects you: everyone is different. The way your symptoms present and play out is unique to you. Be self aware and know your specific set of symptoms, what has worked and not worked for you in the past, and what you want for yourself in the future.
- Don’t let anyone pigeon hole you. If you feel something different do not stop talking about it.
- Don’t let anyone talk you into or out of how you feel.
- Know your rights: specific to the universal healthcare system in Canada, you have rights. Some that will help you advocate for yourself:
- The right to self determination: you have the right to choose your care, including which interventions you will allow and which ones you will not. You have the right to be free of coercion when deciding your treatment.
- The right to an informed choice: you have the right to know everything about treatments, diagnoses and interventions without information being withheld. In making choices on your behalf, you have the right to ask questions, and persist in requesting information until you are satisfied.
- The right to refuse: You have the right to refuse interventions and treatments. You have the right to refuse admittance to hospital. Use informed decision making to help you decide what is best for you and your loved ones.
- The right to a second opinion: the have the right to question diagnoses and paths of treatment; you have the right to request a second (and third) medical opinion
- Know your resources:
- Many hospitals have patient advocates or social workers that can help you navigate the system. You have members of parliament that can help fight for you, and social service agencies that care about your well being. Seek out these services locally to help you.
- Many provinces in Canada have laws that protect your right to determine your care if you lose capacity to advocate for yourself. Advanced Directives and Living Wills are part of this process, as well as appointing a trusted Power of Attorney, either for personal or financial care. Navigate your local system to determine what you have access to legally.
Have allies: I was very lucky when I got sick because I had my daughter to advocate for me and she taught me how to do it for myself. You may have family, friends, support group members, and other patients that you can lean on in times of struggle to help fight with you. Sometimes the most important tool you have is another person who can echo your concerns and stand with you.
Patient Bill of Rights (Ontario): http://ondri.ca/sites/default/files/HSF%20Patient%20Bill%20of%20Rights.pdf
Patient Ombudsman: https://patientombudsman.ca/
Although this article is specific to Ontario Canada know that in this year 2018 you have many of these rights a well.
Start researching your local government services and go from there. Remember this your body and only you can make the most informed decision.