Speaking up against bullying in the patient community

Patients are not alonebullying happens in all areas of life

Many of us are aware of school campaigns against bullying, protecting school aged children from harmful experiences that pose life-long lasting effects. Phrases such as “Don’t be a bystander” and “stand up” are used to remind us of our obligation to help those who need it. Yet, these efforts rarely continue into our adult lives, and have mainly ignored the devastating effects of bullying on people from all walks of life, including in the patient community.

Becoming a “patient” is not a choice, but rather something that we become due to a combination of environment and genes. Some of us find a voice in this “new” world, thanks to patient pioneers who have already paved the way by sharing their experiences and influencing research, healthcare, and policy. We fumble and stumble our way to these research, healthcare and policy tables, and sometimes also when we are at them, given that there is really no “education” or “lessons” for being a patient advocate, other than those that life hands us. 

However, nothing prepares one for the bullying that can take place in the patient community. This is despite our experiences in healthcare as experts in living with our diseases, and facing our own health challenges. It is time to acknowledge, stand up to, and confront this behaviour.

Identifying bullying within patient spaces

Many patient advocates can share at least one story of being bullied. There may be attacks on your condition, experience, and approach to getting involved, or a personal account you have written. The majority of these bullying situations focus on differences in experiences with a shared health condition, and your background/education/socio-economic circumstances somehow not meeting the bully’s definition of a “real patient.” Know that no one defines your experiences or polices your identity but you. 

We share three scenarios from personal experiences and shared by those we work with that we consider bullying. By labelling these as bullying, we hope to give other patients a reference on inappropriate behaviour.  

1.You are “not a real patient”

While we all have different patient experiences, how does one’s experience get to be judged by others as “real” or not? Who says those judging have the only “credible” patient experiences?

Sue Robins, a Canadian patient advocate recently tweeted

“This is my regular Twitter PSA [public service announcement]:

You have your story + I have my story + it is ok that they are different. 

Just because I share my experience, you do not need to negate or minimize it because it is not the same as your experience. 

We can create space for these differences.

One way in which this sometimes manifests itself is when healthcare professionals discuss their own experiences of illness. It can be frustrating for patients to see health professionals, who share similar experiences of illness, being taken more seriously as they have a “validated form of authority.” While this authoritative account may lead to change it may also leave patients feeling that their own experience matters less. Is this a precursor to frustration and anger that may fuel bullying in some form? 

2.Your approach to advocacy is not the right way

There are many patient advocate pioneers who have paved the way via their own approaches and there are also new ways to advocate. Rather than always being on the opposite side of the table from researchers, healthcare providers and policymakers, sometimes it’s about joining their worlds, becoming one of them, and pushing from the inside. Some people choose to write, while others want to speak at conferences. No one has the right to say that one approach to advocacy is the “right way.”

3.You are not good enough

No matter how many years you have lived with your condition, or how many years you have been involved in advocacy work or research, you are an expert in your own experiences. Nobody has the right to disqualify or demean your experiences, or to make themselves more important. You are the only one who can define your capabilities.

What must speak up and hold people accountable

In situations where bullies exist, there are ways in which you can protect yourself, for example by removing yourself from a situation, or seeking guidance from others. But being a patient advocate puts you in a uniquely vulnerable situation—one where you are generally a volunteer or provided with compensation usually not aligned with others and often at the bottom of any power structure in research, healthcare, or policy. Because patient advocates are already in a vulnerable position, and often doing work on a volunteer basis, they are less inclined to push back, or remove themselves from the situation. 

Bullying at its most basic is about the need to feel power and we’d argue, the need to feed one’s own selfish needs. This is not aligned with the motivations of patient advocates who are truly committed to a cause greater than themselves. There is not a place for bullying in the world or in spaces that strive to better lives. Bullying can drive patients from engaging in these spaces, questioning whether the efforts to engage outweigh the negative effects of bullying on numerous aspects of their health.

Patients working together has led to research, health and policy outcomes that would not have otherwise been possible. Patients are all in this together—our voices are stronger together and our collaborative efforts can result in amazing things. However these outcomes are not always the case, and it is time for us to talk more about the fact that bullying happens in the patient world, to say “Don’t be a Bystander—Speak Up!” and hold people accountable so we can end this bullying. 

Dawn P. Richards, Founder, Five02 Labs Inc; Volunteer Vice President, Canadian Arthritis Patient Alliance; BMJ Patient Panel Member

Emily Sirotich, PhD Student in Health Research Methodology McMaster University, COVID-19 Global Rheumatology Alliance, Canadian Arthritis Patient Alliance

Sally Crowe, Director Crowe Associates, BMJ Patient Panel Member