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"I am never not in some type of pain." What it's really like living with Ehlers-Danlos syndrome.

I live with chronic pain. I live with the heritable Connective Tissue Disorder, Ehlers-Danlos Syndrome, or EDS for short. 

I had quite the diagnostic odyssey to get to this point – the point of knowing what the heck is and has been wrong with me my entire life. It took 17 years from the ramping up of my symptoms around puberty to get here.

An EDS diagnosis means that the connective tissue throughout my body is faulty. It is fragile and easily injures. 

Watch: Chronic pain, explained. Post continues below.


Video via NSW Government.

My joints are extremely lax and prone to subluxation, strains, and tears. The real problem with EDS is that connective tissue is right throughout the body. This means that any and every organ system can be affected. It truly is a multisystemic condition.

I am a pharmacist, although I no longer work in a traditional sense as a pharmacist. I once was also a long-haul flight attendant and a real estate agent and I still am; a mother, wife, daughter, sister, friend, and aunty. 

But I am now also a rare disease and chronic pain patient, and perhaps most importantly; an advocate.

You might be wondering what it means to say, 'I live with daily chronic pain.' 

Well, to put it bluntly, I am never not in some type of pain. Pain is a constant and ever-present companion to my life. Of course, it fluctuates, but yes, it is there all the time.

When I get up in the night to go to the bathroom, it is there. When I am falling asleep, it is there. Strapping my kids into their car seats, yep – you guessed it, it is there.

It is always there.

I remember once early in my relationship with my husband; him being taken aback when I made the completely genuine and somewhat naïve comment: "Doesn’t everyone have a headache all the time?"

For me, the pain I experience includes; headaches of every variety. Low back, thoracic and neck pain. Base of skull and head pain from brainstem compression and both small and large joint pain along with the unrelenting hum that is never-ending nerve pain. 

And this is just the 'chronic pain'.

Then comes any acute pain I experience. 

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Acute pain occurs frequently and can be from just generally having overdone things (like going grocery shopping). I regularly sustain new injuries or experience joint subluxations (partial dislocation). 

All of this is thanks to my hypermobile joints. 

My latest unexplainable acute injury occurred a few months back. Carrying my laptop in one hand for a few moments too long. The result being that I spontaneously ruptured a small vein in my forearm. 

This whilst not only being very painful, to the point of an Emergency Department visit being contemplated, was accompanied by a mighty and spreading bruise within minutes. My cardiologist was perplexed by it, and my neurosurgeon’s response was of relief, that he 'wasn’t going to have to perform surgery on me anytime soon'.

Chronic pain conditions are many and varied and can include; fibromyalgia, chronic regional pain syndrome, small fibre neuropathy, endometriosis, osteo and rheumatoid arthritis, and ankylosing spondylitis. 

This list is by no means exhaustive and many people living with EDS do so with more than one chronic pain condition and multiple other comorbid conditions.

Image: Supplied.

Just like me, there are scores and scores of other Australians, primarily women, who have experienced or are currently experiencing the very diagnostic odyssey I had to endure. 

A diagnostic odyssey which is not just limited to the Ehlers-Danlos syndromes but mirrored across many other chronic illnesses and rare diseases. 

More often than not these conditions are also outwardly invisible, making the odyssey that much greater.

Often these people are labelled, or diagnosed incorrectly and an incorrect diagnosis can be anything but positive to an individual's experience. It can be almost impossible to shake the likes of, 'Your racing heart is just anxiety.' 

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Or, my personal favourite, when a general physician overseeing my two abnormally painful pregnancies said, 'You just have an achy body type.' The very obvious undertone being here that I just needed to suck it up.

Getting a diagnosis right and getting it right swiftly vastly improves health outcomes for people living with conditions such as EDS. 

Early intervention, implementation of appropriate management strategies, and prompt referrals can significantly change the entire life course of a person living with EDS for the better.

Despite having hit pause on my career for now and having not become the full-of-life mum or life partner I envisioned I would be, I still find lots of joy in life's little moments. 

The park visits with my two young sons where I have the energy and threshold to go down the slide a few times or the days I can manage to join my husband and sons on short bush walks coupled with the hours upon hours of slowly tending to our modest veggie patch and garden are enough. 

Image: Supplied.

Shifting perspective amongst the chaos and constantly moving goalposts of life with EDS has been imperative to me achieving and maintaining a sense of fulfillment.

Having the understanding, that this is just how it is and that life is imperfectly perfect despite not looking exactly as I had planned and knowing that is okay. The spark is in the small stuff. The light is in the darkness. It is all still there. Sometimes you just have to look a little harder.

Feeling almost impartial to the deficits I cannot control but relishing the fact that through sharing my journey I am and will continue to help other people. 

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I am trying to carve out a role as a health advocate and hope to establish a national charity for heritable Connective Tissue Disorders in the coming years.

Advocating and sharing the knowledge and know-how that I wish someone had been able to impart to me early in my journey is an extremely rewarding experience.

May is EDS awareness month. And I want to shine a light on it.

The complexity but also the intricate and nuanced details heritable Connective Tissue Disorders bring. 

These conditions are a beast unto themselves, with many practitioners not knowing a great deal about them, often having been taught in medical schools; when you hear hoofbeats to think of horses, not zebras. 

But this May, if just one new doctor reads a little more about EDS because of my voice, many many patients will reap the benefits.

Because Zebras do exist, and we quite simply need more doctors listening and keeping an eye out for us.

To learn more about EDS, visit the website of the global community, The Ehlers-Danlos Society.

Janna is a 36-year-old mother of two residing in Sydney's Eastern Suburbs with her young family. She lives with the chronic illness and rare disease, Ehlers-Danlos Syndrome. Janna is also a health advocate, aspiring health writer and a healthcare professional. In early 2020, Janna founded  Zebra Blends - a health advocacy brand, with focus given to both Ehlers-Danlos Syndrome and other heritable Connective Tissue Disorders. You can follow Janna's journey at @ZebraBlends and @The.Rare.Writer.

Feature Image: Supplied.

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