When I was in my last year of high school my knees started subluxing whenever I walked a small distance. I saw my GP, and they decided to do x-rays which didn’t show anything, so they sent me to physio and Wellington Hospital.
Around this time my irritable bowel syndrome (IBS) had really started flaring up and I had a really sore gut.
I sat down one evening and spoke to a family friend who had come for dinner. I think she was a podiatrist. I told her about my knees, how flexible I was, and about all my other symptoms and she told me about a condition she had heard about called Ehlers-Danlos Syndrome.
We looked it up and I fitted many of the symptoms, which was kind of scary. I decided to go and see my GP and talk about it, but the doctor just pushed it away without a thought.
I remember having a really bad allergic reaction in town and going to my GP, and the nurse I saw at the time asked if I had EDS, and I said ‘I fit it but my doctor hasn’t wanted to consider it’.
A few years later, my boyfriend convinced me to move to Hawkes Bay and got me in with his family GP. By then, my symptoms had definitely worsened and as soon as I told him what was happening, he said ‘ I know what you have’, which surprised me. He told me I had Hypermobility Ehlers Danlos Syndrome (hEDS), and diagnosed me. He explained his wife and children had it, which is how he recognised it in me.
I was both scared and relieved, but as the year went on, I felt he wasn’t helping me. I’d go in with new symptoms, and at one point he recognized hypotension issues, but mostly I’d leave the appointments crying and feeling upset because he refused to give me anything for the pain, and just constantly said I needed cognitive behaviour therapy.
After a while I had had enough, so I registered with a health care centre that was free for under 30’s, and I saw an amazing GP who has really helped. I started getting bad nerve pain, and the GP prescribed some good medication. She diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS), and referred me to a physio and for ultrasound for suspected endometriosis.
She also helped me with an old spinal injury that my Wellington doctors didn’t seem concerned about. She has also referred me to see Dr Fraser Burling in Auckland, who I am still waiting to see.
I had seen a rheumatologist privately who just thought I had (Hypermobility Spectrum Disorder (HSD), because I don’t have family history. My Dad has always been slightly sickly with really bad migraines, sprained ankles, and was born with a clubfoot, so I believe I might have inherited it from him.
To this day, I’m sick of physio, sick of being patient and tired all the time and I have started getting light headed after eating.
My current diagnoses are hEDS, POTS, IBS, allergies and a spinal issue which is still under investigation.
But, I continue to fight and try my best to look after myself.
Story published 5 May 2021