Teisha Rose, is a health and wellness mindset specialist, founder of Hurdle2Hope®, author of 'Life Interrupted' and host of the podcast ‘Wellbeing Interrupted’. Teisha uses her experience with multiple sclerosis and stage four breast cancer, along with social worker expertise, to empower individuals with chronic illness and their support network.
True advocacy isn't about causing trouble—it's about ensuring your voice is heard and enhancing your healthcare experience.
Navigating the complexities of health conditions can be daunting. Diagnosed with multiple sclerosis at 22 and later with stage 4 breast cancer, I've learned through countless hours in medical consultations and treatments about the critical role of self-advocacy.
Early on, I was reluctant to speak up, fearing I'd be labelled difficult. However, my journey has taught me that advocacy is essential for anyone living with illness. In this article, you will discover four powerful advocacy tips that can transform your healthcare journey, offering not just better health outcomes but a more empowered approach to living with illness.
Embracing advocacy for personal well-being
Advocating for yourself is essential for honouring your well-being. It involves recognising that your health and well-being must be your priority. Effective self-advocacy means not remaining silent but instead communicating openly and effectively with healthcare providers about your needs and experiences.
Initially, I found the idea of advocating for myself scary, and I was worried it would be perceived as confrontational or rude. However, my experiences have taught me that advocacy isn't about being difficult; it’s about ensuring that our voices are heard and our specific needs are addressed. When living with any illness, understanding and communicating our needs is crucial, as we are the most familiar with our own bodies and the impacts of our conditions.
Four key advocacy tips for those living with illness
Building on the importance of advocating for your own well-being, here are four practical tips to help you effectively navigate your healthcare journey. These strategies, which I shared in my podcast Wellbeing Interrupted Episode 23, are designed to empower you and ensure your voice is heard in the healthcare setting.
1. Have inner confidence
Believe in your right to make decisions about your care. Trusting your choices and communicating them clearly to your healthcare providers is crucial. For instance, one night in the hospital, I overheard nurses criticising my choice to eat chips. They remarked on my high blood sugar levels, saying, "What does she expect? All she does is eat potato chips all day." That night, I couldn't stop crying. The prednisolone (steroid) treatment for my condition had made me terribly sick, and ironically, the chips were one of the few things I could stomach. I felt frustrated and misunderstood as I struggled with the treatment. For the record, my neurologist later confirmed that the chips were fine.
2. Listen to your intuition
Your well-being must always be your top priority. If something doesn't feel right, it's crucial to speak up. I learned this lesson the hard way during a plasma replacement therapy session. The nurse mentioned it was her first time performing the procedure solo, which immediately made me uneasy. Despite my instincts urging me to speak up, I remained silent to avoid seeming confrontational. Regrettably, my fears were realised when she missed the vein, causing the fluid to be improperly infused and leading to excruciating pain. This painful experience was a stark reminder of the importance of listening to and acting on my intuition to manage my care effectively.
3. Be Included in discussions
Actively participate in all conversations about your health. Ask questions and ensure your voice is heard. There was a time when my doctors discussed my prognosis at the foot of my bed as if I weren't present. They made speculative comments about my future, such as, "At least she can still use her hands," which was terrifying as I feared I might never walk again. This made me feel more like an observer than a participant in my own care. This experience underscored the critical importance of being an active participant in all discussions concerning my health. Being fully informed and involved is essential to ensure that the care process aligns with your needs and perspectives.
4. Trust your healthcare practitioner, but verify
It’s crucial to build a trusting relationship with your healthcare provider, but equally important to engage actively in understanding and verifying their suggestions.
Following this distressing episode at my bedside, I consulted my neurologist about my ability to walk again. His reassurance, deeply informed by my medical history and condition, provided me with a realistic yet hopeful outlook. He advised me to shift my focus from trying to wiggle my toes every hour to aiming for weekly improvements. This advice not only helped improve my mental state but also underscored the importance of maintaining trust while staying informed about my treatment plan.
How patient advocacy impacts healthcare
Learning to advocate for yourself and prioritising your well-being extends beyond personal empowerment. Your stories and your voice are instrumental in shaping a more responsive healthcare system. When you share your experiences, you provide healthcare professionals with invaluable insights into the emotional and practical impacts of their treatments. This feedback is crucial for them to adjust their approaches and enhance the care they provide.
This is why I am deeply committed to sharing my journey and experiences. Such openness not only fosters a better understanding between patients and healthcare providers but also contributes to more compassionate and effective healthcare practices. The hoped-for result? Better health outcomes for everyone.
Conclusion: Empowering individuals and transforming healthcare
If you are navigating the medical world, this article aims to inspire you to take charge of your healthcare experience. Honour your wellbeing, advocate for your needs, and share your experiences. Your story has the power to not only transform your own care but also influence the broader healthcare landscape.
By actively participating and voicing your needs, you help create a healthcare environment that respects and incorporates insights from individuals like you, ultimately leading to better care and healthier communities.
Start prioritising your health right now. If you are reading this article as someone living with a health condition, take just 3 minutes to complete our Healing Journey Quiz. This quick assessment will help you pinpoint exactly where you are in your healing process and provide actionable steps that can lead to positive changes. Take the first step towards a more empowered healthcare experience by starting the quiz now!
Read more from Teisha Rose
Teisha Rose, Health and Wellness Mindset Specialist
Teisha Rose is an innovator in health and wellness mindset, transforming personal challenges with multiple sclerosis and stage four breast cancer into a platform for empowerment. As the founder of Hurdle2Hope®, author of 'Life Interrupted', and host of the 'Wellbeing Interrupted' podcast, she has developed the transformative Hurdle2Hope® Roadmap. This offers mindset insights and strategies not just for those living with chronic illness, but also for health professionals and caregivers, significantly enriching the global health and wellness community.
