Welcome to Jess Has EDS – a blog about the science and experience of chronic illness. I’m Jess, and as you may have gathered, I have a chronic illness called Ehlers-Danlos Syndrome (or EDS). I also hold a PhD in Biological and Biomedical Sciences from Harvard University and have been writing about science and medicine for the last 10 years. I’m starting this blog to increase awareness around EDS and to serve as a resource for other patients by ‘translating’ the information in the medical literature into language that nonscientists can easily understand. Knowledge is power, and understanding what is going on in your body can be SO helpful when you are advocating for yourself to get the medical care that you need and deserve.

Like many other people with a chronic, invisible illness, my path to a diagnosis was long and complicated. I was shuttled around from one specialist to another for almost 10 years to try to get some relief from the chronic pain and fatigue that I had experienced for most of my life. Despite all of my efforts to find a doctor who could tell me what was going on, getting a diagnosis really came down to me figuring out what might be going on in my body and then seeking out the right types of care (this is an ongoing battle, as I’m sure many others can relate to).

My first hint that EDS might be the cause of a lot of my issues came when a wonderful doctor that I was working with finally evaluated me for hypermobility. Despite the fact that I had mentioned to countless physical therapists and doctors over the years that I was super flexible and felt like my joints were just “too loose”, I was never actually fully evaluated for hypermobility until 2022. Some physical therapists had listened, but dismissed it being a real issue or possibly the root cause of my problems because they evaluated the one joint included in the Beighton Score where I do not have hypermobility (I’ll be covering the Beighton Score and hypermobility evaluation in future posts, but for now, here’s a link to a site explaining what it is: https://www.ehlers-danlos.com/assessing-joint-hypermobility/). When I was finally fully evaluated, I had an extended range of motion in all of the other joints evaluated (Beighton Score of 7) – DEFINITELY hypermobile.

I went home after that appointment with another piece of information, but I still had no idea how the hypermobility might be related to the other symptoms I experienced outside of joint and muscle pain. However, after some research of my own on the Beighton Score and how it was used, I stumbled upon a description of hypermobile EDS (hEDS) for the first time. I had heard of EDS but honestly knew nothing about the symptoms and causes of the disease. But my jaw dropped as I read through the symptom list and could relate to almost every single one.

I took this information to my PCP, who was also very ill-informed on EDS and questioned my request for a referral to a rheumatologist (hot tip: if a doctor is refusing a referral that you want and/or need, ask them to document their refusal in your chart). After months of waiting to actually see said rheumatologist, I was officially diagnosed with hEDS and my patient journey began.

So, here we are today. As I’ve learned more about hEDS, I started to strongly suspect that I likely had the ‘trifecta’ of conditions – hEDS, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). Despite the fact that my rheumatologist is an angel in my opinion (she actually listened to me and finally did the relevant tests that I had been asking for to examine whether I also had something autoimmune going on), she did not even mention these related conditions, let alone recommend that I get evaluated for them. So my diagnosis journey continues, currently driven by my own research.

I recognize that I am hugely privileged to be able to read and understand the medical literature to figure out what might be going on with my body, and I want to share this knowledge with other people in the chronic illness community so that they can advocate for themselves (or for their loved ones with these conditions). I know from experience how hard it can be to get doctors to listen to you when you are suffering from an invisible illness and no one has time to look at the bigger picture. But I also know that it helps tremendously to go into your appointments prepared with an understanding of your condition and knowing what questions to ask and which referrals to request to get the root of your problems. I hope I can help you at least a little bit with that process.

So please join me as I share what I’ve learned about EDS and other chronic illness on this blog and what I continue to learn during my own journey, including the newest research on EDS and other chronic conditions. I gladly welcome requests on topics to cover that are of interest to you – just drop me a message on the contact form on my “About” page or reach out to me on Twitter (@jesshasEDS). Please subscribe below to find out when new blog posts go up.