Published: 10/05/2023 Tags: Stories

While EDS is a big part of me, I am not only my diagnosis

My hEDS journey is underpinned by grief, pain and stress, but simultaneously features several silver linings of love, support and growth.

My name is Avalon, I’m 22, Dutch-Brazilian and live between the Netherlands and Switzerland. I adore the ocean, horses, dogs, writing, debating, books, music, fuming at the patriarchy, swimming, cycling, film photography, mountains, playing cards and olives. Whilst Ehlers-Danlos syndrome (EDS) is a big part of me, I am not only my diagnosis.

In 2022, after years of medical complications as well as being dismissed as having psychosomatic symptoms, I was diagnosed with hEDS. Alongside EDS, I have comorbid diagnoses of Autonomic Failure (a very rare type of dysautonomia, hence my Instagram name @loninamillion – I’m hilarious if nothing else), endometriosis, autism and gastrointestinal dysmotility amongst others. I am an ambulatory wheelchair user, have a PICC line and bladder catheter, and I use a Portable Oxygen Concentrator and a hard cervical collar. I’ll also be getting a service dog this year!

Because of a lack of adequate medical care, I travelled abroad for my care. I’m now very grateful to have an amazing team who are knowledgeable about EDS and take a multidisciplinary approach. Like many fellow zebras, it took several years of complications ranging from dislocations to sepsis for me to be diagnosed with hEDS. Since my diagnosis, I’ve grieved my independence, a pain-free life, lost friendships and many dreams. The uncertainty, fear, and frustration of my illnesses is a relentless and permanent dark cloud hanging above me.

Whilst 24/7 positivity is undoubtedly toxic, some positivity at certain times is a tool that has made my life with rare and chronic illnesses more manageable. My favourite idiom is: ‘Every cloud has a silver lining’. Perhaps it’s in my nature as someone who’s been sick for a long time, or perhaps it’s a conscious attempt because of my illnesses, but it’s a saying I’ve tried to live by for the last few years. I think it graciously encapsulates the notion that grey clouds – hard experiences – undeniably exist and should be acknowledged for all their heavy pain, but that simultaneously, there can be beauty found in almost all difficult experiences.

It goes without saying that I’d rather not be ill, but if it hadn’t been for my illnesses I wouldn’t be who I am today. I wouldn’t have deepened my passion for writing by working with @rare_youth_revolution where I’ve been able to develop my writing from poetry and articles to writing on rare illnesses. I wouldn’t have met some of my closest friends and chosen family who have shown me the true meaning of unconditional love. I would perhaps not enjoy the little joys in life as much as I do, like the first sip of coffee dancing on your tongue, a new song that mesmerises you, the 20 minutes of dappled sunshine that warms your hospital bed and soul through the window in February, or your favourite food (olives bring me a disproportionate but welcome amount of joy).

My future and how my disabilities will progress is an uncertain road, and one I’m often anxious about. How do I fight my own internalised ableism? Will I be able to graduate from university? Am I going to get worsening symptoms? But I also have many hopes and dreams for the future. I hope to continue raising awareness of and advocating for dynamic and rare disabilities as well as instigating discussions on how women are all too frequently underdiagnosed, misdiagnosed and mistreated for many of these disabilities. I’m excited to continue writing and exploring other accessible passions. And I really hope to grow with a community of fellow zebras, because together we dazzle!

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