Depression Marathon Blog

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Diagnosed with depression 19 years ago, I lost the life I once knew, but in the process re-created a better me. I am alive and functional today because of my dog, my treatment team, my sobriety, and my willingness to re-create myself within the confines of this illness. I hate the illness, but I'm grateful for the person I've become and the opportunities I've seized because of it. I hope writing a depression blog will reduce stigma and improve the understanding and treatment of people with mental illness. All original content copyright to me: etta. Enjoy your visit!

Tuesday, June 6, 2017

Patient advocate

I discovered one thing as a result of my recent back injury. If I didn't advocate, and advocate strongly, for myself, nobody else would have, and my care would suffer. I don't want to get into all the specifics here. I already delineated how inaccurate my hospital discharge summary and MRI reports were in a previous post. Unfortunately, most of my follow-up appointments were preceded by the treatment providers reading those inaccurate reports. I ended up one step in the hole prior to the provider even saying hello. They approached me thinking they already knew my story, and in a few cases actually tried to make my symptoms match what they read rather than looking at me objectively. I felt very fortunate to be a physical therapist, as I knew what the treatment provider should have been looking at. As a result, I had to advocate, and advocate strongly, for myself.

The trick to being my own advocate, I'm learning, is gentle, factual, and very politically correct pressure. I spent the weekend reviewing my available records (thank God for online medical records), and composing written messages to 3 different providers. As a result I got one specialist appointment moved up a week, got some paperwork I needed for my employer completed, and had one procedure considered which was previously deemed unnecessary. Oh, and prior to the weekend, through a series of messages and phone calls, I got my MRI report amended so it now accurately describes my injury. It was an exhausting, tense process, but it was worth it.

I'm relieved. I'm really glad I took the initiative to be my own advocate. I'm glad I have knowledge of the human body and of neurological testing. And I'm grateful I have just enough communication skills to effectively communicate with each provider, presenting my case without offending or angering any of them. (Interestingly, this is exactly the kind of energy and impetus I do not have during a depression relapse.) I feel like my treatment plan is now thorough and heading in the right direction.

As a patient, I rely on my caregivers to be skilled, thorough, and nonjudgmental. I feel for patients who do not have access to some of the knowledge and resources I had during this process. How do they assure effective treatment for themselves? As a healthcare provider, I'm frustrated by the presumptions, incomplete examinations, and mistakes I experienced throughout this process. I understand how some of that happens, but it happened entirely too often during my hospitalization and follow-up appointments. That is disheartening.

I guess the lesson is we all have to be patient advocates. We have to be patient patients yet be unafraid to speak up, gently but decisively, when we feel more needs to be done. If we don't stand up for ourselves, who will? Lesson learned.


The Real McCoy said...

Good for you! You should be really proud of yourself. It can be so exhausting to advocate for yourself during the best of times, not to mention when you're already feeling down. Well done, you! And here's hoping for a fast, full recovery with informed, open-minded doctors.

Anonymous said...

Really proud of you. This is a lesson I need to work on to. Unfortunately, the point you make about this type of self advocacy being impossible when one is depressed, makes it very hard to advocate for myself when I need it most.

Julie Gathman said...

This is a post that will help many people, both patients and health professionals. As always, your writing is clear-headed and actually SAYS something that needs to be said.