What is Effective Self-Advocacy: Reflections and Actions - Journal Entry No. 7
“Self-advocacy is taking care of yourself, being responsible for your health, and describing, almost demanding, what’s most important to you.”
Summary
What advice would you offer someone who is struggling to advocate for themself?
What does it truly mean to advocate for yourself, and why is it often such a challenging journey?
Living with Crohn's and arthritis has taught me the critical importance of self-advocacy, and through this journey, I've come to understand that demanding what you need is essential for personal well-being.
In today's journal entry, I share my personal struggles and observations, offering a candid look into how self-advocacy has shaped my life. Listen as past interviewees like Leah Seth, Deborah King, Matthew Sebastiani, Laura Lee McPherson, Julie Stamm, and Alicia share their insights on self-awareness, courage, privacy, education, and communication.
I also discuss strategies such as understanding your core values, assuming positive intent, doing thorough research, and building emotional resilience.
Building a supportive self-advocacy community is crucial.
Inspired by Leah's quote, “Most people around you want you to be successful, and advocating for yourself is just letting them know what you need to make that happen," we'll explore how most people around us genuinely want to see us succeed, and that effective self-advocacy is all about communicating our needs to achieve that success.
For listeners struggling with self-advocacy, I encourage you to reach out through my contact form at invisiblecondition.com, leave a comment, or connect with me on social media. If I can't assist directly, I'll guide you to exceptional invisible disability coaches who can. Tune in for empowering encouragement and actionable advice to navigate your challenges successfully.
Transcript
Hey, Tim here, host of the Invisible Condition podcast, a show where we talk about unusually normal things and self-advocacy. Today I was thinking about that word, self-advocacy, what it means, why it's so hard, the challenges, but also the impact self-advocacy has when we embrace it. My friend, Chris Ho he was also on the podcast an early episode has defined self-advocacy as this. Self-advocacy is taking care of yourself, being responsible for your health, and describing, almost demanding, what is most important to you. How does that resonate with you? Does that sit well with you? Do you demand what is most important for you? I struggle with this. You know, recently, just working through some complications and some issues with living with Crohn's and arthritis. I have the mindset of like, okay, I'm just going to power through. You know, my arthritis has been up and down Some days. It is so challenging to walk up and down stairs and I just think I don't need meds. I'm going to power through and I don't know why I have that narrative in my mind. Nobody is telling me that. It's all in my head, nobody is telling me that. They don't believe me, and yet I am struggling just to advocate for myself. I just kind of suck it up and so that's why this word self-advocacy is on my mind.
On the invisibleconditioncom website, there is an interview series, a written interview series, that talks all about self-advocacy, and I've asked this question if someone is struggling to advocate for themselves, what advice would you give them? And I just love the diversity of responses and I thought I'd read a couple to you today. Maybe you need this encouragement, like I need this encouragement, but maybe you need the reminder, like I need a reminder. Leah Seth, in a recent interview, said most people around you want you to be successful, and advocating for yourself is just letting them know what you need to make that happen. She also talks about that accommodations are so normal and so, yeah, I just love that. Most people around us want you to be successful, but maybe there's something in the way and they just don't know how or what you need.
An interview with Deborah King says I encourage individuals to prioritize self-awareness and acceptance, recognizing that your health journey is valid and deserving of acknowledgement. She says I urge individuals to embrace their voice and speak up courageously. Matthew Savastani says the more we speak about the conditions we live with, the more we will promote awareness and a more inclusive and accessible society. Laura Lee McPherson says you don't always have to disclose. If disclosure will harm you, it's okay to keep your medical information private and you don't owe that information to anyone. I love that kind of opposite side of things is, you know, we encourage you to speak up, we encourage people to find their voice and speak up. But if you are feeling like you're in a position where maybe somebody will use that information against you, it's okay. Protect yourself.
Julie Stom says learn about your condition, connect with support networks and don't be afraid to assert your rights. Finally, my friend Alicia says in certain scenarios it is outward just being your own champion, speaking up for yourself and your unique needs when no one else is. There's more and more on the Invisible Condition website about self-advocacy and so maybe be encouraged to head there. But also there's a few steps, a few things I've put together if you're struggling to advocate for yourself. One is understand your core values. Building that higher level of self-awareness enables you to know the strengths that you can lean into, assume positive intent and outcomes. You know, not everyone is going to understand what you're going through, not everyone is going to say good things, positive things, but if we assume that positive intent, we assume those positive outcomes. I know there's good. That's going to happen. Alicia also says on a blog post.
I wrote about this. I work to constantly remind myself that ignorance doesn't equal maliciousness. Failure to recognize disabilities creates an opportunity for education and empathy. Third step is do your research, learn and educate yourself. I recorded a podcast recently. It's on the topic of not being able to burp. My good friend Henry shares his story on this. It's going to be coming out very, very soon and maybe you're catching this episode and it's already out. But he talks about research, learn, educate yourself, because you are going to need to take that to your doctor. Educate others and seek allies and build community. It's so important. You know we learn and then if somebody questions, as we're sharing, we now have information to share with them and develop your communication skills. It's so important.:04
I adapted a model, or I created a model called Situation Feelings, impact and Need. What's the situation you're in? What's your current health scenario? What's the situation you're in? What's your current health scenario? What are you feeling physically, mentally, what impact is that having on your life and what do you need? If you follow that model and use that to communicate with your healthcare providers, your friends, your family. I believe that there's going to be some great conversation that's going to happen out there. Build emotional resilience.
There's a model that, again, that I had created reflect, reframe and reach out. Reflect, you know, look back on those tough times. Reframe what's going on just right back to the beginning, as I was saying, is that assume positive intent, reach out to people. And the last one is just understand your legal rights, whether it's in the workplace or society. You know there's seven steps for self-advocacy right there and you know I'm reminded of this.
I need this reminder today myself, as of going into a busy week catching up on work. You know I just again love what Leah says. Most people around you want you to be successful, and advocating for yourself is just letting them know what you need to make that happen. So if you're struggling to advocate for yourself today, just think about that. Reach out to me. You can head to invisibleconditioncom and you'll find the contact form there. Maybe leave a comment wherever you're listening to this. Connect with me on social media I'm quite active on Instagram and LinkedIn and let me know. Maybe you're struggling to advocate for yourself and you need some support. And if I'm not able to support you. I know some amazing invisible disability coaches that can help you. So, anyways, that's what's on my mind today and, yeah, I hope this is encouraging. I hope this is informative and I hope you have a good one.
