How to be an Effective Advocate for a Disabled Patient (The Disabled Ginger blog)

How to be an Effective Advocate for a Disabled Patient

https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for

Content warning: She lists some examples of patients who have died in the hospital including some who had ME/CFS.

 

One time I was having either a migraine or a stroke. Not only was I getting the characteristic visual aura, I was having trouble speaking and my right hand was tingling. Because three separate nerves supply the hand, but most of it felt funny, I knew it was central, not peripheral. Instead of going to the ER I waited a short time (10 minutes) and it passed. But the possibility of being gaslit was definitely a factor in my decision.

 

@RedFox

I'm curious if you experienced migraines before this incidence? I had a friend who went to the ER in her late 50's from the same symptoms and the neurologists told her that it's not normal to have a migraine at that age if you've never experienced one before.

They did an MRI and it was normal.

 

Yes. I was worried but I'd have been a lot more worried if I hadn't had migraines with aura before.

 

“When you are hospitalized - you give up your agency. You are put in the control of doctors & nurses who may have limited understanding of your condition. What & when you eat, when you take your medications (and what medications you’re given)…it’s all out of your control”

 

“Which brings us to the need to have an advocate. If you have the luxury of choosing your advocate (many of us do not) you want to pick someone who is knowledgeable about your conditions, readily available and calm and cool under pressure.”

 

“Have a detailed care plan and advanced directive they can follow which CLEARLY states your wishes should you be incapacitated or unconscious and unable to make decisions for yourself. Make sure your advocate keeps copies of these documents in a safe place and brings them to the hospital.”