Finding Your Care Team
Hi Stretchy Pals, Chaos Coordinator Jess here! I'm currently going through the process of finding a good care team for my HSD/EDS journey and I wanted to share my experiences with you all. Hopefully some things I share here will help you on your own path!
Finding the right care team as someone with a chronic illness or disability can be extremely difficult. Not only do you often need an entire team of doctors across multiple disciplines because you have various conditions (it's almost like our connective tissue is the root of the problem 😅), but you end up having to be the one responsible for connecting all the dots from each visit. Managing your health becomes a full-time job between scheduling visits, going to visits, and doing your own followup. If this is something you experience, just know you are not alone!
Being a person who presents as a non disabled cisgender white woman I know I have privileges for navigating public spaces where others may not. As a femme person trying to address pain and fatigue related issues with medical professionals though, I have had that wonderful experience of being told “it's just anxiety” or “it's probably depression” which of course is not helpful. Needless to say, those doctors were removed from my care team. If they don't believe me or don't want to listen to me, they have no place helping me figure out the best way forward for my health.
You are the expert on You
It's so important to remember while doctors are there to help you, they are not experts on your body; you are! You are the one who has to deal with your symptoms every day so having the proper care plan matters more to you than to the doctor. While they are medical professionals, they are still people who are constantly learning. Try to view them as a partner and work alongside them!
When I first started down the path to diagnose my chronic pain issues, I went to every appointment with a comprehensive one-page document that detailed the reasons for my visit as it related to that doctor, any conditions or symptoms I experienced and in what frequency, and how much it impacted my day-to-day life. This helped communicate things in a clear way the doctor understood so I didn't have to rely on remembering everything I wanted to talk about during my appointment. It also acted as a reference sheet added to my chart to establish a history.
Navigating Visits
Now that I know HSD with some EDS variant is highly suspected for me, I begin new visits for other disciplines by handing over at least one article from medical journals or an article that cites various studies or publications. I bring the education to the doctor so I know they will have the information on what HSD/EDS is and how it can impact their discipline. This always goes over well!
If you are able to, try and take up space at your appointments. Don't let a doctor dismiss your concerns or tell you your symptoms aren't real. If you are nervous about this like I always am (hello social anxiety friends, I see you!), consider the documentation route! If they still don't want to be a partner in your care, you have every right to walk away. It might mean a bit more work for you to find someone new, but the right team makes all the difference. You deserve to be listened to and cared for!
Lastly, I've shared some links below that are great resources I've used for this journey over the last year. I wish you the best of luck!
Ehlers Danlos Society - Provider Directory
The Ehlers Danlos Society is a wonderful place for anyone with EDS or HSD to start! I specifically have been using their provider directory to search for EDS-informed medical professionals.
Talking About EDS - By Dr Cortney Gensemer
Known as @CortDoesScience on social media, Dr Gensemer has & is researching EDS. She put together examples of how you can discuss HSD/EDS, dysautonomia, & more with others to help them understand your experiences
EDS.CLINIC - Doctors & Resources!
I personally have not found medical professionals from this group, but I have printed out articles from them for my appointments. While not every article references medical journals or studies, many do! They make for great starting points in my conversations with new doctors.
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