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My Lupus Story: How I Was Diagnosed

Once upon a time (April 2017) in a country far far away (Australia) I got a cold. A very undramatic start to my story.

I had been working in my new job for about 8 months, working as a physiotherapist & teaching pilates doing busy 12 hour days. I loved it but I had been feeling really tired, any time off was spent resting and I had felt like I had a cold brewing for the last couple of months. I was actually excited to finally have the cold ‘come out’ on Wednesday so it could hurry up and get better. But by the weekend I was waking up drenched in sweat and I had a really acute right sided stomach ache. I remember I battled through and made it to drinks on Sunday afternoon even though I was dripping in sweat, shivering and couldn’t stand upright #priorities.

On Monday I text my boss saying I wouldn’t be in until later that day. feeling silly to be off work with 'just a stomach ache'. I went to the GP who sent me for an ultrasound as she thought it sounded like appendicitis and sent me to hospital. At A&E they all thought it was appendicitis too; I had a fever, raised CRP, nausea, vomiting and this acute right sided abdominal pain. As someone with a history of Ehlers Danlos (EDS type III) with chronic health problems, I was happy that for once this would be a 'quick fix' illness...

I came round from the surgery confused - my appendix was normal, but they took it anyway. All they saw was an inflamed ileum, free fluid in my pelvis and mesenteric adenitis (enlarged and inflamed lymph nodes in my stomach lining). After another night in hospital they sent me away to get better which looking back is odd as they'd found 'symptoms' but not a diagnosis me nor given me any actual treatment other than dosing me up on fluids, antibiotics and pain killers!

This was my first surgery so I wasn’t sure what 'normal' post-op recovery was. I actually was a bit better for the first few days – I think thanks to everything they gave me via IV! But then I deteriorated, the pain came back even stronger, I felt like I had flu, I couldn’t keep anything down and had a constant low- grade fever. I was passed between my GP, my surgeon, a gastroenterologist and various infectious disease specialists. I think I was tested for everything, I had multiple scans and gave either blood or my urine on a daily basis. It was a stressful time, full of tests and different doctors each time suggesting new horrible conditions I could have, then to be told the tests showed nothing. The only thing useful we found out was that my stomach pain was Serositis which is the inflammation of a serous membrane.

My GP then referred me to see a Rheumatologist. I had started to have a horrible deep joint pain in my knees, feet and hands but I didn’t really get why I would see a ‘bone doctor’ when I had fever, rashes, mouth sores and still couldn’t keep anything down! It was only whilst looking on their website I saw the word ‘Lupus’ and basically read a description of myself.

With several positive ANA blood results, and my ever growing list of symptoms, I was diagnosed with Systemic Lupus Erythematosus (SLE) on 27th June. Initially it felt like such a relief to finally get my diagnosis and actually receive treatment (I started on Hydroxychloroquine and prednisone). But a few days later it started to hit me this was a condition for life, there was no cure.

I questioned everything; I am a physiotherapist I work with people, how will I not get sick? Will I ever be able to go back to work? All the treatment side effects sound as bad as lupus symptoms? Will I be on chemotherapy for life? Will it effect my organs? It was like being in this whole new world, a way more confusing and stressful one than the one Aladdin sings about. There was so much I didn’t know and I didn’t understand. One minute I wanted to know everything, the next I didn’t want to even read the word Lupus.

Almost a year since my diagnosis and I still find it odd to say ‘I have lupus’ but I understand this complex condition so much more and feel like I am finally on my way to fighting back. The 2 months I spent from having a cold to diagnosis felt like forever, the limbo of not knowing what was going on in my own body and the lack of control I felt over my health was scary. Compared to others stories I have heard I feel so grateful mine only took 2 months - an average diagnosis of Lupus takes 6.5 YEARS!

We need more awareness, better diagnostics and lot's more research to be able to diagnose and understand the bully that is Lupus. Find out how to join in for World Lupus Day on 10th June: Visit LUPUS UK website here.

Feel free to contact me if you have any questions about my story and stay posted for more of 'My Lupus Story' posts in the future!

Zoe xx

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