Q&As

Community Roundup: How Do You Learn To Advocate For Yourself?

Advocating for yourself when you have a disability or health condition is a constant challenge. Here's some advice on how to do it effectively.

A new illness or health condition can have many life-changing complications, some visible and others less so. Yet the things most people see, like managing medication or learning to physically adapt to new limitations, can obscure an equally critical work: learning to advocate for yourself on a daily basis, about things both big and small. That’s why, for this week’s Community Round-Up, we asked Folks’ followers on : What does it look like to advocate for yourself on a daily basis? How did you learn to do this?

Farrah Kaeser:

Farrah Kaeser

It means being brave and speaking up when I need something, be it accommodation, respect, access, equality, or what have you. Sometimes that looks like reminding folks not to park in disabled spaces, asking for the seat on the subway, putting my foot down about legal issues, or inquiring about accessibility before attending a function. These seem really simple, but often people don’t even think about it until someone asks. I also take the opportunity to write really openly about my struggles with disability and accessibility, which I hope helps others understand the need more deeply.

As far as how I learned to do this, I guess that’s two-fold. Part of it was absolute necessity. The part is I spent a lot of time connecting with other advocates, watching and learning from them, then utilizing the tools I already had to create my own authentic brand of personal advocacy.

Farrah can be found at Twitter at @FarrahGarland and Facebook at @FarrahGarland. She blogs at www.workshark.me

Jed Finley:

Jed Finley

To be an advocate for yourself and your disease you need to be educated in your condition, treatments, and being concise. Personally, I don’t think being an outright expert in your condition and everything involved should be necessary, if we always had a willing audience. The problem is chronic illness patients and advocates face people who believe in easy fixes, misinformation, and/or just don’t listen. I have learned in my time of being open about my illness that the magic word to make people stop listing is Ankylosing Spondylitis. Most people hear a nasty word like that and they instantly check out. This provides us a very short period of time to make our case or educate. Therefore, we need to almost write a script of how to get the most easy to understand information out in a short period of time. Unfortunately, most people have no interest in learning about chronic illness. This is why we need to get our stories out to make words like Ankylosing Spondylitis, EDS, CRPS, UC, Lupus, and Crohn’s household names. We, the advocates, are on the advance team to lay out the information to make the world a little easier for chronic illness patients of the future. I learned from other AS advocates like Dawn Gibson and Charis Hill that advocacy was an option. That there was a need to educate the people around us and we had the right to do so. Like I said, we are the experts in our field, we are the ones who live our pain every day.

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Amy Nicewicz

Amy Nicewicz:

Advocating for myself can mean a variety of things. Sometimes I need to take time off from plans and focus on my health. Other times I need to go outside and spend some time with nature to boost my mood. When I am around other people I need to express how I am feeling. Some days I am not able to participate in a given activity, and other days it is important for me to be a part of something. My needs will not always be fully met but I try to communicate with people about what can be done so I can be successful. I learn through my experiences over time and discover how to tackle each scenario. Advocating for yourself or someone else can be a difficult process, but you have to stick with it and be the little engine that could. Don’t be afraid to reach out and have someone help you through it.

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Rhiann Johns:

Rhiann Johns

This is a difficult question to be able to answer.  Like most people living with chronic illness, my life with a neurological condition is entirely unpredictable.  No two days are like, and my ability to do tasks can change in the blink of an eye.  Making plans or advocating for myself in advance can, therefore, be incredibly difficult as my health can change so dramatically, or swing back and forward like a pendulum.  People find it difficult to understand how we can be fine one minute and be in incredible pain or within the grasp of other symptoms.

But I am lucky, I have two incredibly supportive parents, who although may not fully understand, they do their best to, and I do not have to worry about not being believed as they always do.  Often I don’t have to say how I am feeling or what kind of day I’m experiencing, they know just by looking at me, and they kindly don’t expect me to complete chores or do anything physical. I advocate for myself every day by listening to my body and my symptoms.  They can often tell me what kind of day it will be, and what my limits are going to be.  And how did I learn this?  Through a lot of experience and by making a lot of wrong turns!
Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Amber Blackburn:

Amber Blackburn

Advocacy on a day to day basis always looks different. Some days it looks like standing up to a provider or insurance company demanding the care I need! Other days it could be posting blogs that teach others how to be a self-advocate or posting awareness posts on social media to spread the word about what my illness looks like.  It could even be working with the Chronic Disease Coalition on issues that could help myself and other chronically ill patients. No matter what I am doing it always feels good to know that I advocated for myself or others at the end of the day! Sadly, this is not something I was taught, it is something I have had to learn on my own or from others. Thankfully, I was taught about advocating for patients in nursing school, so in the end it gave me experience to advocate for myself.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Claudia Merandi:

Claudia Merandi

I learned how to be a patient advocate by watching my mom advocate for me. There always seemed to be a problem receiving pain management when I was in the hospital. And I watched my mom fight for me and that’s how I learned.

When I advocate for patients, I listen, I take notes, I ask questions, and I approach each situation differently.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.


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