Advocacy – For Ourselves and Others
Advocacy is a word we hear often, and I use often when describing the work of supporting or speaking up for the hep c affected community. I call myself an advocate. There are others who call themselves activists, and the lines are a bit blurry at times for me. There is overlap, but in the minds of some people and institutions today, activism is akin to radicalism. I disagree with that belief but understand how perception can commonly be a sort of reality.
Advocating for others and our selves takes many forms. My first experiences in advocating on health issues was up close and personal with my parents as they became ill with cancer and other disease and conditions. My parents were strong and vibrant people but as they became ill it was apparent they needed help. Initially it was as simple as going to doctor visits or picking up prescriptions, but as time passed it involved a more active role with nurses, caregivers and hospitals. I tried to be aware of their right to privacy and the importance of respecting their dignity. These are things that are important as I am sure most will agree.
Advocating for us is important in my view. It can look different from time to time and in different situations, but it can be as simple as asking questions. Often I hear from people who say their doctor didn’t tell them about their status, genotype, or treatment options, and prognosis. If you want to be involved in your own healthcare it is crucial to to be part of your care. Asking your doctor questions or for clearer language is something we have a right to do. Some doctors are very good at explaining, and some explain far more than we want, but if we feel at all like we don’t understand or they are dismissive we need to step up and advocate for ourselves. Maintaining our own dignity and showing respect for others is going to work better for all.
A very important piece is about whether you are able to advocate for yourself. Not all of us can be our own advocates due to any number of reasons. Some of us are too sick; some are intimidated by the behaviour of healthcare providers. The system is far too often geared towards making us feel like we don’t have much involvement. We are a “patient” and the fact we are people is lost. We are numbers and illnesses, and when stigma joins the mix we are sometimes even less. Are we undeserving of the best possible care because of these designations? No we are not, but sometimes we can feel like it. We should never be marginalized in this or any other way.
If one is unable or unwilling to be the advocate we need to find someone who can. They can be a spouse, partner, family member or friend. In some places there are people who do work as patient advocates, but those are few and far between.
Advocacy can be an effective tool in other ways that speak to my opening comments about activism/advocacy.
This includes advocating on a broader platform that may include local community, state or province wide, or on a national and global front.
If one is able and interested in getting involved there are existing organizations always looking for help in the form of volunteers. Even if it is joining a walk, participating in a local event, it is all activity that helps raise awareness and increase knowledge about hepatitis c.
My first event was on World Hepatitis Day. I was treating at the time and showed up…all I could muster at the time given how sick I was. I made some new friends that were involved in advocacy and awareness, and it felt like I was part of something much bigger than myself.
It is not for everyone, this kind of advocacy, just like the other types mentioned. If you have the time and the energy I urge you to get involved in some form of advocacy, if only for yourself.
It helps, it really does.