How would you handle advocating for a patient when faced with resistance from healthcare providers?

When advocating for a patient faced with resistance from healthcare providers, I would remain calm and professional, presenting clear and well-documented evidence to support the patient's needs. I would actively listen to the providers' concerns, seeking to understand their perspective while explaining the patient's rights and best interests. By having open communication, seeking common ground, and involving the patient in discussions when appropriate, I would aim to build a collaborative approach to overcome resistance and ensure the patient's well-being is prioritized.

It's often helpful to know the Standard of Care recommended by the appropriate medical associations. All to often Providers in community settings may not be aware or up to date, and refuse treatment. Sharing the Guidelines can work wonders. One specific example is with respect to ordering genetic and genomic sequencing.

Advocating for patients with complex medical conditions can be incredibly frustrating, However, it is crucial to approach these interactions with humility, acknowledging that our knowledge, although extensive, is based on personal experiences, research and knowledge that we have gained through specialized trainings. When communicating with healthcare providers, it’s essential to present detailed and organized information in a manner similar to a medical report. This includes logging symptoms, treatments, and their effectiveness, as well as other factors like triggers and mood impacts. Personally, I have created a digital journal for this purpose, which helps in providing clear and concise information to medical professionals.

La comunicación eficiente es cuando el mensaje llegó con el significado correcto sin interpretaciones ni dudas de cualquiera de las dos partes (emisor y receptor) por ello considero que la comunicación es un arte que requiere experiencia pero sobretodo conocimiento y buen tacto para utilizar los términos adecuados para cada público objetivo, en este caso la comunicación médico paciente dado que partimos de una persona, el médico, muy bien instruida y con conocimiento científico y otra persona , el paciente, que quizás tenga poca o nula información sobre la enfermedad que pudiera tener. Este es el escenario más común que se presenta en los centros médicos por ello es importante recalcar que comunicar es un arte que se debe aprender

Sin confianza no hay posibilidad de iniciar, ni mantener una relación o relaciones. Por ello se dice que la confianza es como una copa de cristal que una vez rota difícilmente ( no imposible) se logra reparar. Las relaciones en cualquier ámbito de la vida son demasiado importantes para tomarlas en broma y mucho menos cuando de salud se trata porque están en juego la vida o la salud de una persona que viene por una cura o calmante para sus dolencias. Por ello la primera oportunidad en una relación debe ser para ganar la confianza de manera sincera y respetuosa sin imponer ideas o ideologías ( creencias ) con las que cada persona viene desde la infancia que tienen un peso inconsciente en el inicio de una relación.

Se dice que el conocimiento es poder porque es tan importante para poder entender y comprender los hechos del pasado, presente y quizás poder entender los hechos del futuro. Esos tres tiempos están relacionados. Por ello es un imperativo que cada persona sea cualquier rol social que juegue asuma el conocimiento como un deber durante toda su vida porque el conocimiento cambia, se moderniza y se actualiza constantemente. En la relación paciente- médico es tan importante que ambos estén lo mejor informados sobre los diversos topicos de la atención médica , para prevenir discusiones irrazonables por cuestiones ideológicas u otras que podrían ser barreras de comunicación efectiva.

This practice has become a cornerstone of my own advocacy efforts. Recognizing the importance of thorough and accurate records, I developed a digital documentation process to track all aspects of my health journey. This includes medications, treatments, physical therapy, other activities, symptoms, what provided relief, and the duration of relief. I also document my mindfulness practices. By keeping detailed records, I can share comprehensive and precise information with my medical teams, ensuring that they have a holistic view of my health. This is especially valuable for individuals with invisible disabilities or those with intermittent symptoms, as it helps in making better-informed medical decisions and improving care outcomes.

Based on my extensive experience supporting people with disabilities, individuals on the gender spectrum, harm reduction, people who are unhoused, people who currently use substances and those with complex mental and physical health needs, I have gained valuable perspective. Navigating Alberta's healthcare system has been challenging but has taught me a lot. Understanding the four stages of Allyship is crucial. It's important not to run away at the first sign of trouble, as that can do more harm. Being honest with yourself and those you want to support is vital. Instead of trying to be a hero for your own image, focus on assisting from a place of humility and love. Be thankful that folxs trust YOU enough to share THEIR stories. 🧡

For me as a patient the most important thing when facing medical gaslighting is not to give up. It can be soul destroying being ignored by the person you hope to get answers from (your doctor) but they are not infallible. If you are not getting the answers you need and you know something is wrong try to document this, communicate it clearly and do not give up. Reaching out to other patients and patient communities can help empower patients to keep going and not to give up hope. When a specialist told me my symptoms were all in my head my world crashed but I did not give up and as a result got my autoimmune diagnosis.