Like so many of us, I was known as the “klutzy one”, I was also the “fussy one”, both early warning signs of EDS and Mast Cell, but like the majority of us, it wouldn’t be picked up for years to come. 

My first dislocation was at the age of 10, playing pinochle with a friend at school, my thumb just completely slipped out. It was probably another year or so before the next dislocation, with my constantly sprained ankles, I, along with my mum, had to be retrained to walk properly to stop hyperextending my ankles.

I also had to deal with food issues throughout my life. The only allergies we’d ever been aware of were to sandfly and mozzie bites, as well being diagnosed with “childhood diabetes” at age 3 – my first misdiagnosis – but I would randomly throw up after meals, certain cooking smells were enough to send me to the bathroom, and I developed an allergy to citrus. I was also dealing with severe migraines that would leave me stuck in my bed in the dark for days at a time, they would come on very randomly with only an auric warning half an hour ahead of time, and the doctors just pumped me full of meds and called it “stress”.

At the age of 17 I was in a volleyball tournament and I caught the ball at a bad angle, which lead to my arm turning purple and going numb. A quick visit to the hospital, diagnosed a break and sent off with a cast. When I went to get the cast off 6 weeks later however my mum and I were taken into a doctor’s office for a consultation. I was told I had something called Classic Hypermobility [insert some weird German sounding name here – which I now know to be Ehlers-Danlos Syndrome] and that it meant I was incredibly flexible and could do “cool party tricks, like bend your thumb back to your wrist” as the doctor himself put it, which I immediately tried and found to my delight that I could do!

Mum and I left that meeting with no idea of what the condition entailed, let alone remembering the name of it, and I went along for years going “Oh, I have this amazing condition which lets me do all these cool flexible things, here look!” A year or so after this initial diagnosis though, the fainting spells started happening. I can remember waking up to a crowd around me on The Terrace in Wellington, with ambulance staff looking over me. I also started to develop severe cramping in my side, which Wellington Hospital ED just diagnosed as mild appendicitis. Mum ended up bringing me home and making the doctors run through a battery of tests to find out what was happening – the end result was “mystery patient” as no-one could tell us what was wrong.

Finally, I gave up from finding answers and moved on with my life, dealing with random pain and the random dislocations every now and again. I found a good chiropractor who told me I must’ve fallen down some stairs or off a chair as a child, as my back and neck were twisted, and mum confirmed I fell down a flight of stairs at the age of 3 but I’d bounced back so quickly we hadn’t seen a doctor. So that accounted for the migraines, yay, one mystery solved.

Then I got seriously sick at 26, and it happened so fast I’m not even sure of the timeline. I went from what I thought of as healthy, aside from a few minor pesky issues like the migraines and random joints “popping” to unable to stand, unable to walk, unable to eat anything or hold food or water down. I was on a carousel ride of going to the GP and being told if it got worse to go to the ER, go to the ER and get pumped full of pain killers and told if it continued to see a GP. It was 10 months of constant doctors’ visits, different medications including anti-depressants and anti-anxiety medication, to the point I felt like I was a walking pillbox.

This was when I learnt the valuable lesson of patient advocacy and seeking second opinions. The first neurologist I saw said I was clearly having a psychotic break due to a past trauma, since there was obviously nothing wrong with me. The second neurologist diagnosed me with ME/CFS, Benign Fasciculation Syndrome and urged me to get tested for Coeliac Disease. Once I started a GF diet however my health finally started to come under my control. I started to exercise properly under a trained Physiotherapist who utilised Pilates and Yoga, I had lost 35+kg’s during my illness so between the exercise and the new healthier diet that my body could actually process, I began working my way towards being truly healthy for the first time ever.

Doing Pilates led me to Pole Fitness after a couple of years, which really amped up core training, but I loved it, and I was looking forward to progressing both with Pole and with Silks, until I wrenched my shoulder. I took a break from exercising as my shoulder completely seized up, and I went to a GP who told me I was a hypochondriac and wasting her time, which really soured me on going back to the doctors for some time. Six months later, after taking it easy and only doing light exercises, my shoulder got worse with the pain spreading down my back eventually leading to me spending 6 weeks unable to stand, sit or lie without excruciating pain.  I got into see a local chiropractor, and we got talking about my medical history, which led him to wonder if I had a condition called Ehlers-Danlos Syndrome. While the name itself didn’t ring any bells, what he was saying about the flexibility and dislocations sounded remarkably familiar. He agreed to work on my back that one time but said due to my suspected condition he wasn’t comfortable working on me and urged me to see a doctor. With my previous experiences with them, I decided to just research the condition, and everything I read sounded just like me! This information then led me to both Mast Cell and POTs and suddenly everything fell into place.

The only problem was I didn’t know what to do with this information. At this point Dr. Burling wasn’t as well-known as he is now, and the only NZ EDS information that came up online was a phone number which I rung but never got a reply. I think it was maybe six months after that that I stumbled upon Loosely Speaking and was given Dr Burling’s details. So, I mustered up all my courage and made an appointment at my local GP for a referral. Thankfully by this point I was able to advocate for myself, as the interim-doctor I saw flat out refused to send the referral. “I’ve never heard of that condition” she told me, then she googled it and despite me doing exactly what the pictures on screen were showing, “I don’t think you have it and I don’t think you need to waste your time or money finding out because even if you do, there’s no cure”. I stood my ground, “I don’t care if you don’t think I have it, it’s my money, if I want to see this doctor and waste my time and money, then that’s my business. All I’m asking you to do is send through this referral.” Three months later my mum and I drove up to Auckland to meet Dr. Burling for my appointment. I had a brief anxiety attack that morning, as I was terrified that I was going to see yet another doctor who couldn’t give me answers, but the reality was nothing I was prepared for. A doctor who listened, and understood, and was able to give me the answers I had been searching for since I was a teenager, I was two days shy of my 31st birthday.

Under the brand-new diagnostic criteria which had just been released the day before, I was re-diagnosed with Classic Ehlers-Danlos Syndrome and diagnosed with Postural Orthostatic Tachycardia Syndrome, with probable Mast Cell Syndrome, and while my mum wasn’t formally diagnosed at the same time, Dr Burling said it was pretty clear to see where it had come from, although my mum isn’t as bad as I am.

My life absolutely changed that day, as I finally had answers. With the guidance of my Physio/Pilates instructor, I wrote a letter to my doctors informing them of my diagnosis and asking if anyone would take me on board as a patient and work with me on learning my new diagnosis. For the first time in nearly 20 years, I have a GP I can trust to work with me because he agreed to it. My Physio taught herself about EDS and started to tailor workouts specifically for me, even when I joined a general class, she always had an alternative for me to do. I found an excellent chiropractor who was willing to learn about EDS, he took x-rays of my neck and spine and we can clearly see where they have twisted from that old childhood injury! He’s even taken on family members who have since been diagnosed with EDS as well. I also got to see an immunologist, I had actually asked to see one since I was 26 and had been brushed off, and he treated mast cell, so we were able to make a few other pieces of my health puzzle fall into place, as well as get treatment for my now numerous “allergies”.

There has definitely been mourning periods as well, knowing that my body just can’t do what I expect of it has been hard, like I’ve always known my body was different, but it’s a whole different reality when you’re formally diagnosed… You can no longer deny it to yourself and pretend everything is fine.  But for me personally, knowing what is going on and how to deal with it is a lot better than not knowing and pretending everything is fine. Getting the mobility parking permit was a really hard step, but even harder was being pushed by WINZ to accept the Supported Living Benefit and take two years off work after I was made redundant. It was definitely the right decision, and it’s allowed me to have a bit of a life again, instead of being in so much pain from working that all I can do is sleep, but it reminds me that I have limitations, because inside, despite knowing the reality and feeling the pain, I don’t think of myself as disabled, or having limitations. 

Story published 22 March 2021