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"I knew it was my life’s goal to change how people see and relate to people with disabilities, people who are different.
- Rasheera Dopson."

THE PATIENT VOICE

Welcome to Issue 10!

Have you ever felt judged by your doctor? By your insurer? It’s not uncommon. Most prejudice in medicine happens without words. 

An obese patient with bad knees is going to get lectured about losing weight. That’s not bad policy unless of course there is no attempt to also address the bad knees. 

A depressed patient with a complicated autoimmune disease might get put on antidepressants or referred to a mental health practitioner. Again, that’s good, but not if the depression label is so big that it covers the patient’s other needs. 
 
Doctors are trained to focus a patient’s visit on the “chief complaint”. What’s your number one problem? Unless you are blessed with good health, most people have more than one problem, and certainly if you have a rare or chronic disease, you are going to have comorbidities that accompany it. You wouldn’t want a doctor to focus on just one symptom if you actually have a syndrome.

Prejudice in healthcare is why it is so important to develop a good communicative relationship with your doctor. Let them investigate what is going on with you. Answer their questions, but also offer information about yourself. Ask your own questions. Good medicine takes teamwork, and there are no more vital players on that team than doctor and patient. 

Prejudice is linked to ignorance. The best way to combat ignorance is with understanding. The best way to understand is through communication.


-- Terry

The Patient Voice is currently read by over 3,847 subscribers. Support us by making a donation, becoming a member telling us your story, or sharing this with friends and colleagues

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I’m Madeleine, a chronically ill gal based in Portland, OR.

Upon dropping out of culinary school due to my diagnoses, I lost my dream of becoming a food stylist and found myself empty. A naturally creative human, I’d always expressed myself in the kitchen that I was now unable to even stand in. My brain didn’t care that my body couldn’t keep up, the itch to create was still there. I started dabbling in teaching myself a few new skills like pottery, yoga, and photography, but nothing lit that same spark in me. At the same time I became very into Youtube’s chronic illness community as I searched for somewhere I could find community, but no one resonated with my often offbeat approach to being sick. That’s when it clicked, maybe I could teach myself to make videos and create my own space! 

I was in a fortunate position to be able to take some money from my savings, so I got my camera the same day I made the decision to pursue a YouTube, and by that night I was practicing being comfortable talking to it. The next few months were a whirlwind of teaching myself to edit and film as I discovered the same rabid passion for video creation as I’d had for making beautiful food! I practiced for hours a day until I finally felt comfortable enough to launch my own YouTube channel,youtube.com/chronicallysaltyy!

Now when I wake up in extreme pain, severe fatigue, or overall just having a symptomatic day, I’m not disheartened. I know that I can satisfy my urge to create within my bodies boundaries because I control what I’m making. I love the editing challenges flares present and the community my creations have brought me has brought back that long gone feeling of social inclusivity my illnesses had stripped from me most of my life! Every week I’m hit with a wave of gratitude as I make that week’s video that not only I was able to find a path and passion again, but I’m getting to create again! I couldn’t be more thankful and I’m excited to see how things grow from here!

 

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