In 2015 I thought I had everything going according to plan. I had a great career that I had worked really hard to progress in. I had worked my way up in a company for nearly six years to become General Manager of 3 departments (customer service, marketing and operations) in Australia and the Philippines. I took a lot of pride in my position and worked 16 hours day/6 days a week.
I had a great relationship with my partner of six years. We had overcome quite a few challenges along the way, but what couple doesn’t experience obstacles? We were engaged and starting to plan our wedding with great excitement. I had been dreaming about this moment for nearly four years and we were finally looking into rings, venues and a wedding dress.
After a lot of sacrifice we had become debt free. We had finally cleared ourselves of debts, including a hefty student loan I accrued even though I did not finish my degree. We were starting to look into purchasing our first home, which where I lived, was quite difficult to get into the market.
Everything was starting to fall into place. I finally felt like I was moving in the right direction.
But this all changed drastically in 2016. I became ill and ended up in the Emergency Room three times in one week. I had lost 10kg (20 pounds) in a matter of weeks, my hair was falling out, my vision was unstable and I barely had the strength to open a door. The hospital was unable to figure out what was going on, instead blaming it on a “bacterial infection” that would eventually clear up. Unbeknownst to everyone, what I was actually suffering from was autoimmune disease – a disease in which the body’s immune system attacks healthy cells.
In my case, I was diagnosed with Hashimoto’s Thyroiditis (an autoimmune disease attacking the thyroid gland) and Undifferentiated Connective Tissue Disease (an autoimmune disease that affects the joints and muscles of the body). This in turn, was exacerbating my symptoms of sinus tachycardia (heart rhythm with an elevated rate of impulses) and atrial fibrillation (the heart’s two upper chambers beat irregularly — out of coordination with the two lower chambers of the heart).
The cause of autoimmune disease is unknown. There are many theories about what triggers autoimmune diseases, including:
- bacteria or virus
- chemical irritants
- environmental irritants
I’ll never know exactly what triggered my immune system to become overactive – it differs for everyone out there but I do think there were several factors that contributed to my diagnosis –
- Medical History
My family has a history of autoimmune disease – my parents suffered from rheumatoid arthritis/alopecia/atrial fibrillation/type two diabetes. My siblings had been diagnosed with ulcerative colitis/extreme eczema/gastroparesis and gall bladder removal. And that’s only what we know of! You don’t realise family history is important until you’re sitting in a hospital bed and they can’t figure out what’s going on and you’re asked for your family’s medical history.
During the whole process of blood work, I also learned I had suffered from EBV (Ebstein Barr Virus) or more commonly known as glandular fever as well as Hepatitis A in the past.
- Eating Disorder
There’s always a stigma associated with eating disorders. I was a little afraid to admit this online but I think it’s imperative for you all to know about my ongoing eating disorder battle, as I truely believe my autoimmune disease was partially triggered by years of restricting my nutrients. My ED started when I was 20. I’ve always struggled with my weight and at my largest was 60kg which for my height was only 4kg away from being overweight. I was very self conscious. I hated how I looked.
There were few things I really felt I had control over. The amount of effort I put into my work and the amount of food I put into my body. I was a workaholic and used this to hide my eating disorder and depression. Initially when I first started restricting food, the weight just came off. I’d receive compliments about how much better I looked and I loved it. But there was a point where the compliments stopped coming in and instead my partner was being asked if I was alright because I looked terrible and stick thin. My lowest weight was 41kgs in 2011. After 2011, I noticed my weight would swing anywhere between 43kgs and 52kgs.
- String of stressful life events
There’s always a reason behind ED’s and issues with wanting control and I won’t get into it much during this post. To sum it up, I had a childhood filled with stressful events and trauma. I had learned to compartmentalise this period of my life and store it in the back of my mind. It started unravelling itself in the months before I became ill and I often felt overwhelmed.
A month prior to my hospitalisation, my partner’s mother passed away. I was at work when I received the call from him, that she was in the hospital with only days to live. We spent 72 hours watching her in agony before she passed away from pulmonary fibrosis.
I didn’t consider myself as having an eating disorder in 2015. But I can see a lot of the same eating habits with my diet during that time. When I was stressed I wouldn’t eat, when I was busy – I would forget to eat. I became addicted to a liquid diet of chai lattes and snacking throughout the day on a few crisps and carrot sticks. I would never eat breakfast because lets face it, who wants to eat immediately after waking up? To someone with a history of ED, the thought of eating in the morning made me nauseous. At lunch – I would just grab a chai and at dinner, I’d eat a toasted sandwich.
I consumed huge amounts of gluten, soy and sugar.
I never let myself have a moment to pause and reflect. I was always on the go, whether it be with work, visiting family or starting personal projects. I wanted to keep my mind busy at all times. I thrived on the adrenaline rush of a never ending schedule. I wanted to feel productive, I needed to feel productive.
If someone had told me at the beginning of 2015 that in 12 months time my whole life structure would collapse, I would have denied it all. The experience left me completely shocked. In a matter of months my mother-in-law had passed away in front of me, I had no control over my body which landed me in hospital, we had fallen back into debt from medical bills and after returning to work, lost my job after months of workplace issues.
2016 was a terrible year but it made me rethink what was important in life. With the lows there were incredible highs – I married my best friend and began my journey toward minimalising everything. I had always thought there was something more that I could be doing, something out there – a calling, if you want to think of it like that.
I was determined to live an intentional life. Every morning I wake up – I count as a blessing. Yes, there is a lot of pain associated with everyday life. There are days I physically struggle to get out of bed due to pain. Yes, at times I become exhausted from all the medical issues and stress. And yes, there are moments where I think over how my loss of mobility and independence has left me feeling useless.
Your thoughts play a large role in remission and I never want to feel defeated by an illness. Instead I want to use it as a platform to bring awareness to what many of you are dealing with on a daily basis.
Your pain can be overwhelming. Your exhaustion is real. Your suffering can be moulded into an opportunity to help others.
But you must stay strong. And through everything, you must stay positive.
Have your doctors definitely ruled out lupus? I’m asking because I read in another one of your posts about how you developed photosensitivity to UV light and skin rashes, which is a hallmark of lupus. The low grade fevers and hair loss are also common with lupus. I’m so sorry that you’ve gone through all of this, but unfortunately I can certainly relate to several parts of your journey.
Thanks for your comment! My immunologist decided to stick with the diagnosis of UCTD. I thought it might be lupus also, with the symptoms, rash and an ANA of 1:1280 but he wanted to place me on Plaquenil and see how it progresses over the next year or so.
I’m currently looking into getting a second opinion, to see if they can figure out if it should stay as the UCTD diagnosis or if it may be lupus. Hopefully I’ll get a bit of clarification from a different doctor.