Living with a chronic illness can be a daily challenge, one that many people may not fully understand. Ehlers Danlos Syndrome Hypermobility Type (hEDS) is one such condition that often remains hidden beneath the surface. In this blog post, we will explore what it's like to live with hEDS, shedding light on the struggles, triumphs, and the invaluable lessons that I’ve learned living with this rare and often misunderstood condition.
Do You Relate to This?
When I was young, I was your normal, active, silly kid. Until you saw me in gymnastics where my nickname was Gumby. In the eighties it was called being double-jointed. Contorting my body just so was entertaining for my teammates and a feeling of pride for me doing things other people found physically impossible.
I fell frequently and was considered clumsy despite also being athletic. I fainted easily with any type of heat or humidity, both of which are commonplace in all of the Summer months in Minnesota. I grew up with a ‘nervous belly’, with frequent stomach pain and bowel issues.
The debilitating migraines kicked in during my teenage years. I remember the dad of my boyfriend at the time, who was a physician, saying, “What would you do if it were the 1800s?”, as if to say, “Suck it up, buttercup!” Thank goodness it wasn’t the 1800s and there were advances in medications by then.
These are just a few examples of the seemingly random, although very much connected, symptoms one can encounter with hEDS.
What is Ehlers Danlos Syndrome Hypermobility Type (hEDS)?
Ehlers Danlos Syndrome (EDS) is a group of connective tissue disorders that affect the body's ability to produce strong collagen, a vital protein that provides strength and elasticity to various tissues and organs. Think of collagen as the framework or rebar of tissue. Ehlers Danlos Hypermobility Type, previously known as Type III EDS, is the most common subtype of this condition. It primarily affects the joints, skin, and connective tissues, leading to hypermobility, chronic pain, and a host of other symptoms.
The Daily Struggles
Living with hEDS often means navigating a world of constant uncertainty. Imagine waking up each day not knowing which joints will be cooperative and which ones will cause excruciating pain. Muscles are often tight and full of trigger points because of how much they are overcompensating for the instability of the lax tendons and ligaments. The tendons and ligaments that are supposed to be responsible for maintaining stability are faulty with damaged collagen and unable to do their job, shirking the responsibility to the muscles instead.
It's a daily battle with one's own body, as the slightest movement can lead to dislocations, subluxations (partial dislocations), and widespread pain. Just a few months ago, I was folding laundry to get ready for a weekend getaway when one of my tendons in my wrist dislocated and painfully got stuck under a bone trapping it. It stayed that way for several hours until releasing, but the damage had been done. The tendon was torn and the all-too-familiar, here comes another unexpected surgery, was added to my list of things to do. This was from doing laundry, not rock climbing, or go-cart racing or some other adventurous activity. This is a tough thing to try and explain to someone who is unfamiliar with hEDS.
Simple tasks like walking, opening a jar, or even holding a pencil can become monumental challenges. Crippling fatigue is a constant unwanted companion, as the body works overtime to compensate for its weakened connective tissues. It’s an energy-rationing game throughout each and every day. The exhaustion is not just physical but also emotional and mental, as hEDS often comes with comorbid conditions (diagnoses that often accompany each other) like anxiety and depression. Not to mention the other common physical comorbidities, such as POTS (postural orthostatic hypotension) and other types of dysautonomia, digestive dysfunction, and MCAS (mast cell activation syndrome), to name a few.
The Isolation
One of the most challenging aspects of living with hEDS is the sense of isolation that can accompany it. The invisible nature of the condition often leads to misunderstandings from friends, family, and even medical professionals. It's not uncommon for individuals with hEDS to be accused of exaggerating their pain or faking their symptoms. It is difficult for people to recognize this chronic illness for what it is when someone ‘doesn’t look like they’re sick’ but are in fact struggling daily. One thing I have realized throughout my life is that there are two things most people are uncomfortable talking about. Pain and death. Talk about either and you’ll easily clear a room in under two seconds.
This isolation can be emotionally draining, leading to a sense of loneliness that is hard to shake. Support groups and online communities can provide a lifeline, connecting people with hEDS to others who truly understand their struggles. I personally find it comforting hearing other people’s stories online knowing that they fully understand what it is like to live with this debilitating illness when others do not. Our stories are all unique, but we share the commonality of persevering through this illness that few understand unless you are living with it.
The Importance of Advocacy
Living with hEDS often requires individuals to become their own advocates. Due to the rarity and complexity of the condition, many healthcare providers are not well-versed in its diagnosis and management. This means that those with hEDS must educate themselves and advocate for their own health.
Ehlers Danlos Hypermobility Type can be especially tricky. Most healthcare providers know EDS to be a genetic condition and assume that a patient needs genetic testing done to confirm a diagnosis. But, what they may not understand is that there is not currently a genetic test that can help to diagnose the hypermobility type. There are genetic tests for some of the other categories of EDS, but not for the hypermobility type. Just last year I spoke to a genetic counselor that didn’t know this. The misconceptions are widespread in our healthcare system adding insult to injury.
Advocacy extends beyond the doctor's office. Many individuals with hEDS find themselves fighting for accommodations at work or in educational settings. It's a constant battle to ensure that their needs are met and that they can live a fulfilling life despite the challenges.
Finding Strength in Resilience
While Ehlers Danlos Hypermobility Type presents countless challenges, it also fosters incredible strength and resilience. Those living with the condition often develop a deep sense of empathy and compassion, having walked a path filled with pain and adversity themselves. They learn to appreciate the small victories, whether it's a day with reduced pain or mastering a new coping mechanism.
hEDS has taught me perseverance, patience, acceptance, tolerance, adaptability and compassion with an extra dose of humor. I have an ability to better understand another human’s struggles regardless of their situation. I know that each has their own path, their own learning curve and that they are doing the best they can in whatever situation they are facing.
The hEDS community is filled with inspiring individuals who refuse to let their condition define them. They excel in various fields, from advocacy to art, and use their experiences to raise awareness and support others. Their stories serve as a beacon of hope for those newly diagnosed with hEDS.
The Importance of Self-Care
Living with hEDS requires a strong commitment to daily self-care. This involves a combination of physical and emotional well-being. Physical self-care often includes gentle exercises to strengthen muscles and stabilize joints, daily therapies for pain, as well as a focus on proper nutrition to support overall health. In the coming weeks, I will be highlighting my favorite hEDS tools and therapies that have helped me as well as my diagnosis experience.
Emotional self-care is equally important. Coping with the challenges of hEDS can take a toll on mental health, making it crucial to prioritize self-compassion and seek support when needed. Mindfulness techniques, therapy, and relaxation practices can be invaluable tools on this journey.
A Bright Future
Despite the daily struggles, those living with hEDS are forging ahead with determination and hope. Research into EDS, including hEDS, is advancing, offering the promise of improved treatments and a deeper understanding of the condition. Awareness is growing, and advocacy efforts are making a difference.
As we conclude this exploration of living with Ehlers-Danlos Syndrome Hypermobility Type, it's important to remember that individuals with hEDS are not defined by their condition. They are parents, artists, doctors, students, advocates, and so much more. Their resilience and strength in the face of adversity are an inspiration to us all (if I do say so myself).
If you or someone you know is living with hEDS, know that you are not alone. Feel free to reach out via email or find me on social media! Reach out to support groups, connect with others who understand your journey, and continue to advocate for your health and well-being. The Ehlers-Danlos Society is a comprehensive, indispensable resource for anyone wanting to learn more, find physician specialists and support groups. Inspire is another resource, not just for EDS, but for various chronic illness community support. Together, we can shed light on this rare condition and work towards a future where those with hEDS can live their lives to the fullest.