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.”