MANAGING HYPERMOBILITY
Building Your Healthcare Team
Finding hypermobility-aware healthcare professionals, building trusting relationships and feeling empowered to make decisions about your care.
EMPOWERED HEALTHCARE
You deserve empowering healthcare
Living with symptomatic hypermobility can mean navigating a complex mix of symptoms, conditions and healthcare professionals. Pain, fatigue, joint instability, dysautonomia, gastrointestinal symptoms and other concerns may overlap, making it difficult to know where to begin or who to see.
For many people, finding appropriate healthcare can be challenging. You may have experienced fragmented care, conflicting advice, long waiting lists or practitioners who aren't familiar with hypermobility-related conditions.
Building a healthcare team isn't about collecting as many specialists as possible. It's about finding people who understand your needs, take your concerns seriously and work collaboratively towards your goals.
A good healthcare team should help you understand what's happening in your body, explore appropriate management options and make informed decisions about your care.
You deserve to be listened to, included in decisions and treated as an active participant in your own healthcare.
Your healthcare team brings clinical knowledge and expertise, but you bring something equally valuable: your lived experience! You deserve care that listens, respects your perspective and empowers you to make informed decisions about your own health.
IT’S A PROCESS
Building a healthcare team that works for you
Your healthcare needs are individual, and your team should reflect that. Some people benefit from a small group of trusted practitioners, while others need support from several different professionals.
Where possible, look for healthcare professionals who understand EDS and symptomatic hypermobility. But finding someone with that knowledge isn't always easy.
A practitioner doesn't need to know everything about symptomatic hypermobility to be a valuable part of your team. What matters is that they listen, take your concerns seriously, recognise the limits of their knowledge and are willing to learn.
You shouldn't have to repeatedly justify your symptoms, fight to be believed or feel dismissed simply because something falls outside a practitioner's understanding.
Finding hypermobility-aware practitioners
Finding healthcare professionals who understand symptomatic hypermobility and EDS can make a meaningful difference to your care. But knowing where to look isn't always straightforward.
Patient communities, local support groups and EDS organisations can be useful starting points for finding practitioners with relevant experience. You can also ask your existing healthcare professionals for recommendations.
Remember, EDS awareness isn't just about what a practitioner already knows. It's also about their willingness to listen, recognise uncertainty, continue learning and adapt their approach to your individual needs.
When your team isn't working for you
Not every practitioner will be the right fit for you, and that's okay. Sometimes your needs change, a treatment isn't helping, or you've reached the limits of what a particular practitioner can offer.
Other times, you may find yourself feeling dismissed, pressured into treatments you're uncomfortable with, or repeatedly leaving appointments feeling unheard.
You are allowed to question your care, seek a second opinion or change practitioners. You don't have to continue seeing someone simply because you've been seeing them for years, they've helped you in the past, they’re really nice, or you feel guilty about leaving.
Questions worth asking yourself:
Do I feel comfortable raising all my concerns?
Is my treatment being reassessed when things aren't improving?
Am I being treated as an active participant in my healthcare?
Do I feel pressured to keep returning for appointments?
Is this care helping me work towards my long-term goals?
You have the right to ask questions, discuss your concerns, seek a second opinion or explore other options for your care.
Changing practitioners doesn't necessarily mean someone has done anything wrong. Sometimes it's simply about finding the right support for where you are now.
