The first clues that Julia had of having an autoimmune disease coincided with a family holiday to Taiwan — not that she had any idea back then. Her eyes started to swell ever so slightly, accompanied by more obvious eye bags that seemed to appear overnight. She brushed them off as perhaps an allergy or the aftermath of sleep deprivation pulling off the last-minute planning for the trip.
However, a month on, not only did the swelling not go away, it had in fact gotten worse. Her grandaunt sternly told her to see a doctor, astutely observing that “You have a thyroid issue.” Julia patronisingly agreed with no intention to follow through, but when her eyes started to water uncontrollably and her vision was affected, she Googled her symptoms and what she saw worried her enough to see a general practitioner.
She is thankful her grandaunt gave her that much-needed prod. At the GP, she rattled off a list of symptoms besides those concerning her eyes — amongst them muscle weakness, breathlessness and recurring canker sores (she did not mention her enormous appetite as she put it down to tandem nursing her two young children). The GP had a hunch that it was hyperthyroidism and ordered a blood test, which confirmed his suspicions. She was referred to the ophthalmologist as well as the endocrinologist at the hospital, where the latter ran another blood test. They declined to confirm that it was Graves’ disease even though she had the classic bulging eyes of the condition (caused by a related condition, Thyroid Eye Disease or TED for short), but said they would call her when the results for her bloodwork came in.
When they didn’t, she called the clinic to find out for herself, but they would not release them over the phone. She either had to officially request a copy and pay for it, or wait until her next appointment. She chose to wait the two months until she saw the endocrinologist again. Looking back, she reckons this was due firstly to human error, then inadequate communication on her part, which highlighted to her the importance of clearly articulating her needs and wants in a time-strapped medical system.
Three long, lonely and confusing months after she was first told she had hyperthyroidism, she finally received confirmation of a Graves’ disease diagnosis, which is a condition that attacks her thyroid gland, and in turn caused the aforementioned TED that affected her eyes. However, she was provided with little help with disease management. It was almost as if having an autoimmune disease was a mere footnote in her medical records, a mere happenstance that had no bearing on her treatment. Questions remained on her mind: How could she manage her symptoms better? How could she prevent her condition from getting worse or prevent triggering another autoimmune disease on top of Graves’?
Deciding to be proactive in her health journey, Julia decided to research and try out different complementary treatments and approaches to healing, including traditional Chinese medicine and going vegetarian. One day she stumbled upon the Autoimmune Protocol (AIP) and after an initial struggle, has been on it ever since. The AIP is a lifestyle that aims to eliminate or reduce inflammation, pain, and other symptoms caused by autoimmune diseases. The AIP diet focuses on eliminating food that can trigger or aggravate symptoms, replacing them with health-promoting, nutrient-dense foods that give the body the fuel it needs to heal, and ultimately reduce the severity of autoimmune diseases or even put them into remission. Ever since she embarked on the AIP, she has seen the positive changes in her gut health, Graves’ disease and overall condition, and that has motivated her to continue making tweaks to her lifestyle and diet in line with the AIP.
Adopting the AIP diet has not been without its drawbacks, however. It has made having a social life challenging due to its strict dietary requirements, and Julia often has to bring her own food to outings. At other times, however, maintaining control over what she eats is manageable as a stay-home mother, though she doesn’t insist that her family eats exactly as she does. The discipline required for the diet to work means she can only look longingly at her favourite food like croissants and roti prata. However, she has realised that much of the food that she used to consume was not that nutritious anyway, even though she thought she was generally eating healthily.
She has put any plans of work and career on hold as she puts her health and family first. After giving birth to her eldest child and pre-Graves’, she started an online business selling nursing-friendly clothes and bras. This however was put on the backburner after her second child was born, stemming from a desire to focus on her children. Two years later came her diagnosis and following that, a surprise pregnancy. With so much on her plate currently, she is apprehensive about going back into the workforce and carving out a career for herself, as she is mindful that any potential stress may trigger a flare or complications to her health. However, giving up the financial independence she was once used to, and instead becoming a potential financial burden has been a source of recurring frustration and guilt for her, feelings that she is still learning to make peace with. Nevertheless, she is aware that even having a choice over whether to work is coming from a place of privilege, and she is grateful for it.
She also realises that having an autoimmune disease isn’t necessarily all gloom and doom. One of the positives she has gained from her experience with Graves’ is being better able to advocate for herself as a patient. Julia has realised that she does have an influence on her treatment plan when she reads up on her condition and is able to have more constructive and enlightening discussions with her doctors, instead of abdicating responsibility and relying fully on her doctors to manage her health. In the foreseeable future, her goal is to continue to work on supporting her body to heal, and once her children are a little older, to explore pursuits that energise her.