As a volcanologist I work hard on local and international research projects and I thrive spending long physically demanding days on volcanoes. I am also in pain almost every single day.
May is Ehlers-Danlos Syndrome (EDS) awareness month. Over the years sharing my journey has helped others who have similar struggles, I hope this can help people closer to home.
Janine Krippner looking at lahar deposits down the Whangaehu River. Photo: Brian Perttu.
So many of us have chronic health issues – prolonged conditions that can limit activities in daily living and require medical attention (even when we try to just tough it out). EDS is a group of connective tissue disorders that affect different parts of the body. For me it’s mostly issues with joints, back, and headaches, plus a raft of other issues. EDS can impact blood vessels, skin, eyes, gums, and organs. It also causes issues like chronic fatigue, brain fog, heart issues… the list goes on and some are fatal.
Janine Krippner
Something many of us have in common as we try to find a diagnosis and help, is the messaging that there is nothing wrong with us, when something very clearly is. It’s all in your head, you’re doing it for attention, or you’re a hypochondriac. This can be so much harder than the physical impacts, which is why it’s so important to build awareness about conditions like this. You may not have EDS, but if you have other issues that remain a medical mystery you are not alone.
These sorts of conditions are often invisible. We usually look totally fine (unless you’re in a wheelchair or on crutches). I have found that years of pain has meant that I can function perfectly fine most of the time and you wouldn’t have a clue what’s going on below the surface. For me, living with EDS has built a solid resilience and strength that I doubt I would have had otherwise. I’ve managed to find the silver linings.
Having a disability does not necessarily mean someone cannot do things, it’s best to not assume. Because of EDS I am fit and strong. I maintain my fitness to not just get through each day, but to be able to climb volcanoes and do strenuous fieldwork. Getting a diagnosis meant that I could figure out how to take care of my body, and what to avoid to prevent damage. There is hope. When I was younger I feared that I wouldn’t be able to do what I wanted on top of worrying that people wouldn’t let me do things, but I am doing just fine. It is getting worse with age, but I keep adjusting and thankfully my determination is serving me well.
We are so very capable of adapting. I also have a wonderful doctor at the Te Awamutu Medical Centre, I cannot stress enough how much of a difference that makes.
If you’re living with undiagnosed symptoms my heart goes out to you, that is a tough journey to be on. I stumbled across my diagnosis online then went to the right specialists (geneticist and rheumatologist) to get it formally confirmed.
We have to be our own advocates. If you have a loved one with similar struggles, stick by them. Listen to them, they might not want suggestions or advice but just to be heard. We are capable of so much, sometimes we just need flexibility and adjustments.
If overly-bendy joints, dislocations, easy bruising, chronic pain, fatigue, or stretchy skin sound familiar to you, check out the EDS societies online.
