Recommended Book
anticipate taking my advocacy to social media , but that ’ s been the biggest surprise delight so far — just seeing how receptive the internet has been in general to the kind of advocacy work I do and their interest in learning and applying self-advocacy to their own care through demonstrations of that which I portray in my videos .
What message would you like to share with the world about the importance of advocating for your self and others ’ rights as a patient ?
The message is that while it may feel like there are so many gray areas , and there are so many things we ask for in so many different words , all self-advocacy is asking is to stay alive . It may be hard to see the forest through the trees when you ’ re in the exam room , but it is life or death when it comes to selfadvocacy . Your words and actions are the difference between getting a diagnosis and not , between finding appropriate care and settling for inappropriate care . It ’ s hard work , grueling , but we have to do it .
Are there any new topics you ’ re passionate about exploring in the future ?
I ’ m really interested in how finance fits into the care and lifestyle of chronic illness . I think that will be my next big focus — how someone with a strong financial privilege copes with disease versus someone with less resources .
Her book can be found on Amazon , local libraries and on her website . An audio version can be found here .
Visit ilanajacqueline . com for more information .
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