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Health Advocacy

Take Control of Your Health Journey and Secure the Care You Deserve

Living with a chronic, long-term condition like Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) can often feel like a never-ending battle with the healthcare system. Many individuals with complex chronic conditions report being dismissed, misunderstood, or overlooked by healthcare providers. It’s all too common for patients to leave appointments feeling unheard or uncertain about their next steps. The frustration of not receiving the care you deserve can be overwhelming, but you don’t have to face this alone.

As a health coach with lived experience of hypermobility-related conditions like hEDS and HSD, I combine personal understanding and professional advocacy to help you navigate these challenges. I’m here to ensure you get the care, respect, and understanding you deserve, while also providing a calm, strategic, and empowered approach to healthcare advocacy.

Frequently Asked Questions

Advocacy in the context of health coaching involves supporting you in effectively communicating your needs and concerns within the healthcare system. It’s about ensuring your voice is heard, helping you secure appropriate diagnoses, referrals, and treatments, and providing education on complex conditions like hEDS and HSD.

As a health coach, I do not diagnose or provide direct medical treatment; instead, I work with you to bridge the gap between your healthcare providers and your lived experience, ensuring you get the support you need. This involves guiding you in presenting your case clearly, advocating on your behalf with healthcare providers, and helping ensure that every aspect of your health is addressed.

By helping you to understand your symptoms and needs, I help navigate the system in a way that allows you to get the best possible care.

Advocacy provides you with the tools, strategies, and support to effectively communicate your symptoms and needs to healthcare providers.

Whether it’s helping you get the right diagnosis, secure referrals, or advocate for better treatment, I’m here to ensure that your voice is heard and that you get the care you deserve.

Through advocacy letters, strategic communication, and proactive support, I help bridge the gap between you and your healthcare providers

While doctors focus on medical diagnoses and treatments, I provide support in making sure your concerns are heard and acted upon. Many people with complex conditions like hEDS or HSD are not always taken seriously by healthcare providers. With my advocacy services, I help ensure that your symptoms are understood, your condition is properly diagnosed, and your care plan is comprehensive. I act as a liaison between you and your doctor, helping you articulate your needs and collaborate on the most effective plan of care.
If you’re feeling frustrated with the healthcare system, finding it difficult to be heard, or struggling to get the right care for your chronic condition, advocacy can help.

Whether you’re dealing with misdiagnosis, delayed referrals, or unclear communication from your medical team, my advocacy services will support you in getting the appropriate care and treatment.

Yes, absolutely! I’ve helped many clients who struggled to get referrals to specialists that were previously denied or overlooked.

For example, I’ve worked with clients who were dismissed by their primary care physicians, with their symptoms wrongly attributed to anxiety or stress. By creating detailed summaries of their lived experience and ensuring clear communication, I’ve successfully advocated for them to receive the referrals and care they deserved. I can help you present your case effectively, articulate the need for specialist referrals, and make sure you get the appropriate care.

Additionally, I work in partnership with doctors who are knowledgeable about hEDS/HSD and can offer you the right investigations for a diagnosis. By collaborating with EDS-aware professionals, I ensure that you are seen and supported in the way you need.

As someone who lives with hEDS and HSD, I understand the nuances and challenges of these conditions on a personal level.

My lived experience allows me to bring a deep understanding of what you’re going through, making it easier to advocate for you effectively.

I know how frustrating it can be to feel dismissed or misunderstood, and I bring both empathy and expertise to help ensure you’re getting the care you need.

Through my work, I’ve helped clients with hEDS, HSD, and related conditions in several significant ways. Here are a few real-life examples of how advocacy has made a difference:

  • Dismissal by Primary Care: Many clients with hypermobility-related conditions are often dismissed by their primary care physicians, with symptoms wrongly attributed to anxiety or stress. By providing clear medical summaries and detailed communication, I’ve helped clients advocate for themselves, leading to proper diagnoses and specialist referrals.
  • Receiving Referrals That Were Previously Denied: For some clients, essential referrals were repeatedly denied or overlooked. With my support, these clients were able to clearly articulate their symptoms and successfully secure the referrals and care that they were previously denied.
  • Advocating for EDS Awareness: A common challenge for many of my clients is the lack of understanding of the interconnectedness of EDS and its comorbidities among healthcare providers. Through education and advocacy, I’ve helped providers better understand these complexities, leading to more informed care.
  • Securing the Right Diagnosis: Many clients with hEDS and HSD face years of misdiagnosis or no diagnosis at all. By collaborating with healthcare providers and leveraging my own experience, I’ve helped clients finally receive accurate diagnoses, which then leads to more effective treatment plans.
  • Workplace Advocacy: Living with a chronic condition can also present challenges in the workplace. Many of my clients have struggled with workplace adjustments, accommodations, and understanding from employers and colleagues. I advocate on their behalf, helping them communicate their needs for flexible working arrangements, reasonable adjustments, and overall support, ensuring they are better understood and supported in their professional environment.
  • Family Advocacy and Validation: Navigating chronic illness often requires support from family members, but they may not always understand the full scope of the condition. I provide clients with the tools to communicate their needs to their loved ones, offering both validation and confidence. By educating families about hEDS and HSD, I’ve seen clients gain better understanding and emotional support at home, which can be critical for overall wellbeing.

These are just a few examples of how advocacy and strategic communication can have a profound impact on securing the care that individuals with chronic conditions like hEDS and HSD need.