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EVOLVERE

“But you don’t look sick!”: My Journey with Graves’ Disease

Updated: Aug 26, 2023

Introduction


Until I was diagnosed with an (invisible) autoimmune condition, I had been generally healthy for most of my life. I had spent my 20s travelling, seeing live music, building lasting relationships, and starting my career in academia. I had worked as a Teaching Assistant in many different courses in my department and coordinated several research projects. I had travelled to conferences all over the world and I knew that I wanted to work as an academic for the rest of my life. Everything was on track and I was feeling excited for the future.


My story begins in 2012, shortly after I had submitted my PhD dissertation. It had been a challenging experience, but I was happy that I had managed to persevere and complete it. I was blessed to have amazing family and friends, and a job that I loved. I was feeling hopeful and looking forward to the next stage of my career. As I started my first contract (adjunct) role, however, it was clear that I was not well. Every morning I would wake up and my eyes would be red, raw, and very painful. I tried using multiple different kinds of eye drops but they only provided temporary relief. What was happening? I visited an optometrist and was referred to an ophthalmologist, who told me that my eyes were exceptionally dry but otherwise normal. In retrospect, however, this was the first sign that something was wrong.



Getting a Diagnosis


Over the next 24 months, I had become more and more exhausted as I tried to figure out what was going on. I started to have a lot of trouble sleeping and felt worn out all the time. I felt anxious as soon as I opened my eyes in the morning, but I could not pinpoint why. I kept going to my primary care doctor and explaining how bad I felt, but she was unable to provide a diagnosis. She knew that I usually worked between 60 and 70 hours a week at work, and kept telling me to take a leave and get some rest. In retrospect, this was good advice, but it did not solve the problem.


My physical health continued to decline and I began to suffer from gastrointestinal symptoms, which resulted in hospital admissions for tests. Whenever I described my intense workload in academia, doctors would advise me to consider taking a step back and reducing my work hours, but I was determined to secure a tenure-track position and unwilling to consider this idea. I became more and more anxious over time, and my sleep declined simultaneously, to the point where I was only sleeping between four and five hours a night. I began to lose weight although I felt hungry all the time, and started to feel like I was losing control of my body. This was incredibly distressing, and I started to feel overwhelmed and miserable all the time.


Finally, I went back to my doctor and requested a comprehensive set of blood tests. This time, the results revealed why I was suffering so much: my thyroid levels were highly abnormal, to the point where I was advised to see an endocrinologist without delay. The diagnosis? A “textbook case” of Graves’ Disease “… an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism).” It is a common condition and frequently affects women younger than 40. I had virtually every symptom, and I was now a member of the chronic illness community.



Riding the Rollercoaster


While Graves’ Disease is highly treatable with medication and other treatments, there is no guarantee that any of these will work long-term. Even individuals who choose to have their thyroid removed will need to take medication for the rest of their lives. I opted to try medication and immediately began a daily regime of high doses of meds. I found that while this resolved my symptoms in the short-term, it certainly was not a cure. Although I felt physically better, the side effects of the medication were hard to manage. For the first time in my life, I gained weight rapidly and found that it was impossible to lose, as the medication slowed my metabolism dramatically. While I was grateful to be feeling better, I began to realize that this would be a life-long struggle.


Within two years, I was in a tenure-track position and working very long hours (again), and soon understood that I was more likely to experience a “flare” in my illness when I was burnt out and exhausted. My blood test results reflected this too, and I have stayed on a rollercoaster of medication changes for almost a decade. Sometimes, I can last several months on a low dose, but I inevitably experience a flare up of symptoms, leading me to consult my endocrinologist to adjust my dose. I have yet to consider other options to manage the disease, such as surgery, but may do so in the future. At the moment, I try hard to eat well, sleep well, and manage the stress in my life, and I have finally learnt to take weekends off! In the words of Frances Ryan, “Self-care has become a new priority – the revelation that it’s perfectly permissible to listen to your body and do what it needs.”



The “New Normal”


While I have no doubt that the burnout culture and incredibly high workload expectations in academia contributed to my illness, I am lucky that my institution has been supportive of the accommodations needed to manage my illness effectively. For example, I rarely have classes scheduled early in the morning, as I frequently have physiotherapy and personal training sessions at that time to help maintain my strength and overall fitness. I have several friends in academia with chronic illnesses too, and they have been a very important source of support. It is a club that no one wants to join, but I feel very grateful for the support that I have received.


I would encourage any other academics who live with a chronic illness to check out the resources available, particularly communities such as Chronically Academic and Disabled in Higher Ed. More broadly, I encourage people to advocate for themselves to ensure that they receive the support that they need from their institution and involve their doctors if they need additional assistance. I am lucky to have a wonderful multi-disciplinary team who provide me with excellent care, and I know this has made a difference on the trajectory of my illness. I doubt that I would be able to work full-time as a tenured academic now without the support of these medical professionals, as well as my family and friends.


That said, living and working with a chronic illness in an industry that emphasizes productivity and high achievement is challenging. I still have many days when I feel guilty that I simply cannot work the same hours that I used to. Often, I long for just one single day when I feel rested and energized. For the most part, I have accepted that this is my new normal, but the grief can still take a toll on my mental health. When I feel like this, it is important that I reach out and talk to people who can empathize with and understand what I am going through.


Overall, what has this experience taught me? Firstly, many of us live with chronic illnesses and many of these conditions are invisible. Until I get to the point where I am visibly unwell, no one knows that I have Graves’ Disease, but the unpleasant symptoms affect me long before I reach this stage. Please be kind and understand that there is enormous truth in the saying that “everyone is fighting an invisible battle.” Perhaps more importantly, I have learnt that in academia, it is easy to get caught up in publishing as many papers as possible, getting promoted as fast as you can, and winning multiple awards for your work. My chronic illness has taught me that none of this “white noise” really matters. At the end of the day, there is nothing more important than your health. Please put yourself first.




 

Source:


Mayo Clinic. (2020, December 5). Graves’ disease. https://www.mayoclinic.org/diseases-conditions/graves-disease/symptoms-causes/syc-20356240

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