Patient advocates seem to give off this impression of being fearless, great speakers and always knowing the right thing to say. I often looked patient advocates and admired their confidence and strength for the work they do.
I still do.
It has only been in the last few years that I have really identified as a patient advocate. The term doesn’t really exist the same way as it does in the States. There are a lot more opportunities for patient advocates stateside compared to the UK and some people make a living off it.
Over recent months I have struggled with my advocacy work. I have found myself feeling overwhelmed whenever I sit down to write or post on social media so I have been fairly quiet. It is not because I don’t care but almost I care too much but during this uncertain time that we are all living in I don’t know how I can contribute in a manful way when I can barely leave the house just now. I know that my confidence and drive for advocacy will come back soon.
Meanwhile I wanted to share some of the worries I have had as a patient advocate particularly when dealing with healthcare. As far back as I can remember I have always felt awkward when speaking to my healthcare team but when telling them about my involvement in research, product testing, advocacy work or even volunteering with Asthma UK (Now Asthma UK British Lung Foundation Partnership). I don’t know why and I wish I didnt have this nervousness about it but I do and I am not sure it is something that will ever go.
I have managed to build my confidence speaking and public speaking. I am not afraid to voice my opinion and justify why I have said what I have said yet I still till into a quivering wreck if I want to challenge something that my team suggests. Part of me worries about what the team would say. Will they think I am making a bigger deal out of my condition than it is, do they think because I am so involved in asthma research and innovation that I like having asthma, or do they think I am a know it all because I do so much. These are all fears that I still have to this day and they never seem to get easier. If there are any other health advocates out there it would be great to know how you conquered your fears.
I think a lot of my fears and nerves have come from my negative experiences from the health community. Not the professionals but from fellow patients. In the UK particularly there seems to be this culture of competitiveness about who can be the most ill and if you are involved in things then you must be really unwell. But that is not the case. I have faced so much adversity from fellow patients particularly within my own condition that has left me questioning if being a health advocate is really worth it. Health advocacy is not paid. Everything I do is off my own back and in my own time. Now that I am not working I can spend more time doing advocacy work but when you come up against unwelcome comments or people speaking behind your back it can be hard. Due to some of the comments I have received mainly around attention seeking I think this is where I get my insecurities from about being a health advocate and also speaking to my health team. I question myself and over think what they may think. Even though I have no clue what they actually think about me being so involved in research, innovation, advocacy and awareness.
I wish there was more support for health advocates and also that the culture in health among patients would change. It can be a very toxic environment and if you are not strong and allow the comments to bother you then health advocates will not want to continue the work that is actually vital. No one knows health better than someone living through it, so they are they best people to try and improve the lives and wellbeing of others. Putting them down is not just hurting them but hurting the entire community as well.
Despite all this I still love being a patient advocate. I have had some incredible experiences and made some great friends that I know will always have my back, even when they are on the other side of the pond too!