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Do you find it difficult to advocate for yourself while hospitalized?
I like to think that I am my own best advocate. But, unfortunately, this is not always the case. Although I am well versed in my medical history, am organized with my lists of medications, medical conditions, doctor’s numbers, and keep these things on hand, it is hard for me to advocate when I am under extra stress. This came up this past week when I was in the hospital receiving breathing treatments and had to be admitted over night.
When I was in the emergency room, I was not at the hospital where my PH team is located. When I am at hospitals that aren’t specialized in the treatment of rare diseases, it is hard for me to explain my treatment protocol, make sure they have the appropriate records, and state my needs, especially during a physically and mentally stressful time.
Today, I went over what could help me advocate for myself and my needs when I am in this situation. With the help of my therapist, we came up with ways that my medical conditions can be communicated to the doctors in the ER. We came to the conclusion that it would be best for my own doctor to write a list of my current medical conditions with a brief explanation of each one, medications, treatment, oxygen usage and protocol for wearing oxygen during activity and at night.
Having something written out by my doctor and giving the medical team at an ER someone to contact in case of emergency will be very helpful to avoid any confusion and avoid having to explain my diagnosis over and over when I am not in the physical state to do so.
Do you find it difficult to self advocate for your medical conditions and needs while in the hospital? How do you handle this? Does your doctor have any forms filled out for you to give to medical professionals? What helps to make this easier for you?
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