7 Things I Wish I Knew When I Was First Diagnosed With hEDS
Hi, I’m Jess – full-time patient and part-time hEDSucator. I live with hEDS, POTS, MCAD, Fibromyalgia and Essential Tremor, the majority of which were only diagnosed two years ago (at age 27), despite a lifetime of textbook symptoms.
Some of my symptoms continue to be extremely disabling, and I have suffered deep psychological wounds at the hands of the healthcare system. In 2021, I left my first career as a classical musician to focus on how I could use my negative experiences to help other hypermobile humans.
Through my website www.delicatelittlepetal.com and my Instagram page @delicatelittlepetal, I write educational articles on all aspects of life with chronic illness, discuss adaptive living techniques for a better quality of life, and empower fellow patients to practise fearless self-advocacy.
One of the most common challenges that I see people in our community facing is the fact that hEDS currently has no officially approved treatments, leaving patients to research and implement their own care, largely unaided. While it is essential for us to continue to tackle the systemic issues in the healthcare system that fail us, I also believe that patient-to-patient communication is an extremely valuable way to improve our overall knowledge and well-being while we are waiting for change.
Today, I will be discussing the 7 things that I wish I knew when I was first diagnosed with hEDS, in the hopes that it will spare you some time, money, or heartache whilst navigating this difficult road.
(p.s This article focuses on hEDS as it is my own pathology, but I have aimed to make the information as broad as possible, and useful to people living with other sub-types of EDS or other hypermobility related disorders.)
Disclaimer: I am not a doctor and this is not medical advice. Please stay safe and involve a qualified health-care professional in any decisions you make regarding your health.
Some People Still Won’t Believe Your Pain (and That’s Ok)
As is often the case with rare or invisible conditions, some people still won’t understand the extent of your pain after you have been diagnosed. A diagnosis can be a big relief, but it can also lead to the anticipation that things will change – and some things will, but unfortunately, you may also continue to face similar challenges with friends, family, and doctors not making an effort to understand what you are going through or how they can help you.
This can be heart breaking, especially when it comes to the family and friends category. However, it is important to remember that quality is way more important than quantity when it comes to relationships. My advice? Focus on investing your energy in the people who are actually going to take the time to understand you and your new life. Take the time to mentally thank everyone else for showing you their true colours, and let them go, as gently as possibly.
2. Many Professionals Claim to Understand Hypermobility, But Few Actually Do
You may have already experienced this: a physiotherapist who gave you exercises that left you feeling worse? A doctor who told you that hypermobility was benign and didn’t cause any symptoms? Unfortunately, there is widespread misinformation about hypermobility related disorders, even among professionals. There are few doctors who know how to set-up a proper treatment plan for hypermobile humans, and even fewer physiotherapists who will be able to enact the rehabilitative aspects of that plan correctly.
Admittedly, a large part of this problem comes from the flaws in the modern, western medical model; providers simply don’t have enough time with their patients to effectively treat complex, long-term conditions!
In recent years, shame-fuelled terms like “doctor shopping” have become more and more prominent in our vernacular, but I think it’s time we all realised that there is no shame in actively seeking healthcare professionals who have the correct experience and approach to help us. In the last three years I have been to 6 different physiotherapists, none of which ended up being properly versed in EDS or it’s associated co-morbidities, and ultimately, it was the 6th and final therapist who was the most helpful to me. Despite having the least experience with hypermobility, his willingness to learn and have open conversations about my progress has allowed us to adapt treatment to my specific needs; an attestation to the importance of a good patient/provider relationship.
It’s worth noting that the Ehlers-Danlos Society has a global database of hypermobility “friendly” professionals. (https://www.ehlers-danlos.com/healthcare-professionals-directory) While it sadly does not yet cover all areas of the globe, it is a great starting point for many people.
Unfortunately, there may be times when we are forced to have a relationship with a professional who is anything but “friendly” or even worse, does not respect our understanding of our own body. It is important to remember that you can say a firm “NO” to any treatments or lifestyle changes that you know will impact your body negatively. Going “against” medical advice can be scary at first, but the sooner you can learn to trust yourself and your body, the sooner you can stop wasting time and limited energy on things that are ineffective or harmful.
3. You Will Probably Be Forced to Become a Part-Time EDSucator
Due to the issues raised in part 2, it is very important to not only become literate about the facts of your condition, but also on how it affects you personally, and how your body has historically responded to different treatments. Being able to calmly and clearly communicate these two things to your provider will give you a much better chance of getting the help you need, even if you are unable to find a professional with prior experience in treating hypermobility.
Aside from medical professionals, you may also have to have the knowledge to educate insurance providers, your school or workplace, and friends and family. I find it very helpful to have “go-to” phrases that explain the key aspects of how my conditions affect me, as well as favourite articles that I can give out as “evidence” if needed.
Beyond this, you may also find yourself feeling the urge to correct misinformation or dispel myths touted by well-meaning people in your life (or strangers on the street who feel the need to approach you!). This is a noble but exhausting pursuit, and while far from an obligation, having answers “prepared” can remove a large part of the emotional burden.
Finally, being informed about your conditions and keeping your eye on reputable sources can be a great way to stay up to date with emerging and alternative treatments, something which many of us incorporate into our care-plans at some point, due to the limited options available.
Of course, I recognise that all of this is quite the task, so here are some resources to help you get started:
The Hypermobility Syndromes Association - https://www.hypermobility.org/
The Ehlers-Danlos Society - https://www.ehlers-danlos.com/
Move Balance Sport - https://www.movebalancesport.com/hypermobility-syndrome
“Yoga For Bendy People” by Dr Libby Hinsley (Not just about yoga! It contains a multitude of information on all aspects of hypermobility in its initial chapters.) - https://www.amazon.com/Yoga-Bendy-People-Optimizing-Hypermobility-ebook/dp/B0B169BHLF
Just in case we have any Francophone readers: I highly recommend the website and books of Dr Stephane Daens (he is my EDS specialist here in Belgium and is at the forefront of EDS and MCAS/D research here). - https://www.docteurdaens.be/
4. You May Have Other Undiagnosed Health Issues
While recent research shows a strong correlation between hypermobility related syndromes and a variety of other illnesses, this has yet to trickle down to becoming common knowledge among healthcare providers. Not only it is common for patients to spend their younger years having an absolute plethora of strange and seemingly unrelated symptoms dismissed by doctors, but it is also common for people to be told that their other symptoms are not related to their hypermobility even after they have been diagnosed.
While some of these co-morbidities can be more of a nuisance, others can be debilitating or even dangerous, so it is essential to address any lingering health issues, and make your doctors aware that you have a condition that affects the body’s connective tissues - extending beyond the joints into the skin, organs and blood vessels.
Some of the most common examples of hEDS comorbidities are: Autonomic Dysfunction (problems regulating temperature, heart rate, blood pressure, and sweat), the Mast Cell Activation Diseases (affecting the intermediary cells that control immune response), chronic pain conditions like Fibromyalgia, CRPS, and Myofascial Pain Syndrome, neurological conditions like Migraine and Epilepsy, Myalgic Encephalomyelitis (ME/CFS), Craniocervial Instability, Anxiety, and Gynaecological abnormalities.
Unsurprisingly, it can be a lot of work for people who live with multiple of these conditions to be properly diagnosed and treated, and several specialist doctors are usually required. It has taken me about three years of non-stop appointments to receive official diagnoses and treatment plans for all (or at least the majority) of my health concerns, some of which I have had since puberty. While this may be disheartening to some, I can assure you that the end results have been worth it!
5. You Have Probably Been More Psychologically Affected Than You Realise
Other than the fact that hypermobility is linked to a larger amygdala and a tendency to over-produce adrenaline in response to stressors (leading to anxiety or a feeling of being “too sensitive”), many of us experience mental health concerns that are linked to our conditions. There are several factors that contribute to this; some of which are fortunately coming to the forefront of the discourse about chronic conditions, such as the unreasonably long timeframe for diagnosis, financial hardship due to lost wages, and poor treatment from doctors. However, looking back at my life pre-diagnosis has led to some other uncomfortable realisations about the psychological impact that this condition had on me.
I have slowly been through a multi-step grieving process, feeling saddened by how different and isolated I felt during childhood, angry about the traits and perceived short-comings that I was put-down down for by both teachers and students alike (such as difficulty writing with a pen). I am resentful of all the clues my doctors missed that something was seriously wrong with me, and of the unreasonable expectations healthcare providers placed on me about diet, exercise and lifestyle changes to “get myself better” when I was lacking in any real support or explanation. Most of all, I am grieving the fact that my sense of self has been severely warped by trying to keep up with the able-bodied expectations of a world that wasn’t built for me, and I worry I will never truly be free of the toxic thoughts and behaviours that this has caused me to develop.
If any of this resonates with you, I would urge you to spend some time reflecting on the ways that you have may have been psychologically affected by this illness, and giving yourself as much time and grace as possible to work through any associated feelings.
Journaling and sharing your reflections with trusted loved ones can be very therapeutic. You may also want to consider professional help. I have personally benefitted from psychotherapy, somatic therapy and chronic pain support groups. Similar to working with any other kind of healthcare professional, it’s important to note that not all therapists are created equal, and that some approaches tailored for able-bodied patients may be harmful to you. I recommend seeking out a therapist who has either personal or professional experience with chronic illnesses for best results.
6. Exercise Progression Can Be Painfully Slow (But It’s Worth it)
Factors like exercise intolerance, poor proprioception, frequent injuries, and low muscle tone can make it very hard for us to get and stay “in shape.” It’s very easy to fall into the trap of comparing our progress to non-hypermobile humans, especially with the boom of mainstream fitness culture in recent years. Remember that your body is built differently and has unique challenges and limits when it comes to exercise. Unfortunately, it is completely reasonable to expect that it will take weeks or months to recover proper function after an illness or injury, and it is very likely that you will need to train more carefully and frequently than your peers to achieve the same things, or maintain the same level of muscle tone.
It’s also worth noting that the hypermobility syndromes can affect people quite differently and that certain aspects of EDS are progressive in some cases, so it can be equally unhelpful to compare yourself to others that have the “same” problems as you.
One of the reasons that I love Pilates so much is that there is usually a focus on slow, well performed movements, and quality over quantity of reps. It also improves the mind-body connection and can help us recognise which movements are more difficult or risky for us at different stages of our movement journeys. Shortly after being diagnosed, I was eager to “get back to” what I was physically capable of before, something which flung me into a push/crash cycle of hard-work, quickly leading to injury and burnout. It wasn’t until I started the Sheldrake Pilates and Movement “Summer Stability Program” in 2021 that I learned about the importance of steady, sustainable progress.
It is important for goals to be approached slowly and without the expectation of adhering to a strict timeline. While this may be frustrating at first, the long-term improvements be will be worth it!
7. There’s a Whole Community of People Out There Just Like You!
Growing up with a hypermobility related disorder can be extremely isolating. Many of us experience an inability do the same things as our peers, but have our concerns dismissed by doctors. We may have certain symptoms or grief that other people our age simply cannot understand, and have to endure the psychological impact of chronic pain, frequent injuries, and physical limitations with little to no support. Sadly, some of us have particularly bad experiences with the institutions that are supposed to protect us, such as schools or hospitals, leading to trauma and/or the belief that it is not “safe” to talk to others about what we are going through.
The good news is that with the rise of social media, it is easier than ever to find a whole network of people who understand the unique situation you are in. Whether you seek friendship, advice, or simply the validation that you are not losing your mind, you can find it!
There are a growing number of Facebook support groups for people with rare diseases (try searching the keywords of your condition along with your location), Instagram pages that dispense general advice and support, and YouTube channels where patients provide firsthand accounts of their experiences.
Personally, I recommend you come join me on Instagram @delicatelittlepetal. I may be biased, but I think we have one of the best, friendliest and most knowledgeable communities ;)
I hope that these suggestions were helpful and make the transition to post-diagnosis life a little easier. Further resources about hypermobility and life with chronic illness can be found on www.delicatelittlepetal.com. Questions and feedback are always welcome via email at jess@delicatelittlepetal.com.