Trust Your Gut: Healthcare Advocacy & Boundaries

[00:03:17] Trusting medical professionals vs. Advocacy

• This is a fine line – trusting your gut and trusting your doctor can be difficult to determine. It is incredibly important to find someone who listens and is willing to help you find answers or determine facts.
• If your gut is telling you something, even if a provider does not believe there is something wrong or worrisome, they should find ways to put you at ease and understand why this is probably the case, not just dismiss your concerns

“Sometimes you just really have to be assertive and get over the fear of being seen as rude.”

[00:09:17] Diagnosis impact

[00:14:32] Seeking multiple medical opinions

[00:19:13] Overcoming challenges with neuroplasticity

“You can’t teach an old dog new tricks, but you really can.”

[00:23:24] Importance of a team you can trust

• Communcation is key
• In circumstances of disabilities, long term diagnoses, or disease there are generally many medical providers involved, make sure they are all paying attention to what the others are doing
  • You can request that you have appointments all together
  • Messaging on mychart/group emails – whatever communication tools work best for the entire team
• A doctor or provider can be a good one without being a good one for you – get comfortable recognizing  the fit for your needs

[00:26:30] Setting boundaries with medical providers

• Communicate your expectations with your care providers, don’t be afraid to ask what can be expected as well
• Write things down/bring someone with you
• Make sure you feel as though all the questions you have are answered, it is the providers job to help you understand
• Be collaborative

“So you’ve got to remember, you’re like the owner of the team. This is your body.”

“I think it’s okay, if you need things re-explained to you, if you need to slow down, you’re not ready to schedule something, and you need to put it out another week…Yeah, another appointment to clarify. It’s okay to not ride the wave that they throw at you.

[00:33:13] Mishandling of care

• Oftentimes when people feel their care was mishandled that their complaints are just yelling into the abyss, but it is important to get those down in writing
  • This can help educate the care provider, sometimes they truly don’t realize they are perceived a certain way
  • This may require them to take classes or get probation
  • If many people make complaints and there is a paper trail this can potentially protect patients in the future

[00:37:26] Understanding empathy in healthcare

[00:41:09] Limitations of medical providers

“Never be ashamed of it. Never feel that the medical team’s feelings are more important than your own or your own advocacy.”

[00:46:09] Hope for Hydro

• Started by Rachel after her experience with her son
• Contributes to research initiatives for Hydrocephalus, raises awareness, and provides resources for individuals and families affected by the condition