The existence of these resources speaks to significant gaps in care for youth. These shared practices are valuable pieces of community wisdom. At the same time, they are not permanent, infallible, nor sustainable solutions to existing health inequities. Despite our efforts, the strategies that we use to seek out adequate healthcare come with challenges. Here are some limitations that folks have shared with us.
Inaccessible care: “Lack of access is lack of healthcare”
These strategies cannot compensate for a lack of services (e.g. lack of providers). As one youth put it, “sometimes no amount of self-advocacy can get you the care you deserve if there isn’t care available”.
Inconsistent results: “The biggest challenge is that it doesn’t always work.”
The strategies that we use to seek adequate care may not work. This can be incredibly exhausting, harmful, and disappointing. While some strategies may help us reduce harm in some cases, often we are still exposed to unsafe and invalidating interactions. This can be harmful in itself and lead to cancelling and avoiding future appointments.
We may find that using these strategies can lead to harmful interactions. For instance, having to disclose personal information for others to attend our appointments may lead to unanticipated harm.
We could be trying to answer practitioners’ questions in certain ways that align with our desired outcomes, without having potentially relevant medical knowledge. For example, we could withhold information that could be important to our care.
Advocating for ourselves can a lot of time, energy, money, and work. Many of these strategies assume that we have the physical, emotional, financial, and social resources to try and maintain such dynamics. For instance, we may not be able to take time off of work and school. We may not have others that we trust to bring with us to appointments. We may feel concerned about burdening others when seeking support. We could also have financial limitations that prevent us from trying different practitioners for a good fit or accessing treatments at all. These barriers prevent us from accessing services and can result in hesitation to continue seeking services.
One youth summarized this as such, “Youth are isolated, and our lives depend on our abilities to advocate for ourselves during a time when we need the most support. The entire burden of the failed healthcare systems rests with us. It is unacceptable and the health care systems need to step up and give children and youth proper care.”
Unwanted Health Consequences
Given the limitations of these strategies, many of us will still have worsening, ignored, untreated, and invalidated health concerns. This creates the potential for serious, chronic, and additional physical and mental health concerns.
Impacts on Relationships with Healthcare
The need for these strategies can change the way that we relate to, seek out, and trust healthcare providers. For self and community protection, we may be more selective with the care that we access and more hesitant to seek care when we need it.
Lack of Sustainability
As these strategies depend on our resources, they can easily and quickly exhaust our financial and social supports. This creates downstream impacts on our access to other needs, such as food, housing, and relationships. Strategies that rely on personal capacities instead of addressing systemic harm cannot sustainably benefit everyone in our communities.
Lack of Systemic Change
The healthcare system in BC comes from and perpetuates paternalistic, colonial, and capitalist structures that have historically pathologized and oppressed various communities. These structures create and perpetuate racism, heteronormativity, ableism, fatphobia, and other forms of oppression. The healthcare system comes from and is a part of these power systems. This influences how practitioners define and understand health, wellness, unwellness, patient-provider dynamics, treatment, ethics, and evidence. It impacts the creation and implementation of medical training, equipment, procedures, research, and more. It can also affect how we as youth understand and relate to seeking healthcare and services. The strategies listed here are not meant to and cannot change nor replace the systemic harm perpetuated through the healthcare system. At best, these strategies serve as harm reduction. Without greater systemic change, these cycles of systemic oppression will continue over generations.