How I Learned to Love Graves’ Disease
Words by Antonina Mamzenko
I sat on my bed, feeling like I’d just climbed Mount Everest. My heart was pumping, my whole body was shaking, and I was struggling to catch my breath. Yet all I’d done was climb up 14 steps to the first floor of my house. The last three steps I just about managed on my hands and knees before collapsing in a heap on my bed.
By that point, I’d been feeling constantly tired for months. Simple things like taking my then three-year-old son to the playground seemed impossible and I dreaded even attempting them. Over the course of a year, my health had worsened progressively. I lost over three stone in weight, I struggled to stay awake all day, my hands would shake uncontrollably and severe brain fog had destroyed my thinking and memory.
Bizarrely, at the time I didn’t realize there was anything medically wrong with me. I assumed that exhaustion, insomnia, and brain rot were what inevitably followed when a person is running a business while solo-parenting a child with disturbed sleep.
Of course, this was not normal.
By the time I finally connected the dots and made an appointment with my doctor, I was getting dangerously close to a thyroid storm, a rare but life-threatening condition which can occur when a furiously overactive thyroid gland is left untreated.
During a thyroid storm, the thyroid gland is pumping out thyroid hormone which accelerates the rate at which your body burns glucose in every single cell of every single organ, your pulse races, your heart fibrillates, sometimes whipping blood cells up into a clot. It feels like your body is trying to kill itself as every bit of you goes into overdrive.
What finally cut through the brain fog and prompted me to call the doctor was the speed of my weight loss (I dropped from a size 14 to a size 8 within a few months) - the usual cancer alarm bell which most of us look out for. Thankfully, it wasn’t cancer - but that didn’t mean the recovery would be easy.
I did have an overactive thyroid gland. I was diagnosed with Graves’ Disease, one of the more frequently found types of hyperthyroidism - an immune system disorder that results in the overproduction of thyroid hormones.
Like all autoimmune conditions, Graves’ Disease can get ugly and affect your life in major ways you can’t necessarily predict. But even though it was devastating for me both personally and professionally, falling sick to that acute degree was a hidden blessing. The diagnosis lit a fuse, and it was a catalyst which set off a chain reaction of change that I’m sure would never have happened otherwise.
I became more self-aware, more self-reliant, and started caring less about what others thought of me. I was on a mission - to rebuild my health and my life. It started with me being forced to stop relying on others and take my health into my own hands.
Even though the medication I was given improved my symptoms, after two years I still wasn’t healthy, and I was still exhausted. I had also put on more weight than I’d lost initially, which I found hard to handle - both physically and emotionally. The doctors didn’t seem to care as long as my symptoms were at bay, so I resorted to the good old “if you want something done, do it yourself” attitude, which has always been my back-stop.
I had just enough brain power to start searching for alternative thyroid treatments. A friend recommended I read “The Immune System Recovery Plan” by Dr. Susan Blum, who is a medical doctor and autoimmune disease sufferer herself.
I was skeptical at first but desperate enough to try almost anything, so I dived in with a strict exclusion diet and gave up gluten and dairy. This was tough - don’t let anybody tell you giving up dairy and wheat is easy. But, to my shock, I rapidly felt much, much better. So much better in fact, that I was able to stop my medication completely.
Changing my diet radically had another, rather unexpected benefit - I had found my squad.
I’ve always been a loner and an introvert by nature, much more comfortable inside my own head than around people. This has always made it difficult to make friends and go from small talk to forging meaningful friendships.
But once I started talking about my condition with people around me (having to explain why you are on this weird diet and have to carry your own milk with you makes that a necessity), to my joy I quickly discovered I was not alone.
There were, in fact, several people in my immediate circle who were suffering from some form of autoimmune disorder - Graves’ like me, Hashimoto’s (underactive thyroid condition), and adrenal fatigue to name a few - but who wouldn’t have talked about it without me starting the conversation.
Being able to finally talk to people who knew exactly what you were going through was priceless. Some of those people have since become my closest friends, people I can discuss anything with, and I am extremely grateful to have them in my life.
Work-wise, I was at a turning point, too. Having been forced by exhaustion to neglect my business for over a year had left me in a financial hole where I faced the choice: rebuild my photography business from scratch or find a job. Looking at available part-time jobs was frankly depressing, and I knew my skills and experience were worth more than what was on offer. But more than anything I wanted to be around my son, be my own boss, and work flexibly. So I made a decision to give myself a year having another go at my business, but this time on my own terms. And if that didn’t work, I thought, I’d find a job.
While I knew starting over would be painful and even embarrassing, it was also liberating, because I could basically do what I wanted - I couldn’t fail, because I was already at the bottom.
Prior to my diagnosis, I had been a complete people-pleaser, doing what was expected, blending in and afraid to stick out. Now I cared far less about what others thought of me - or my work. I finally was able to trust my instincts and do what I believed was right - and it paid off big time.
Within a year, I was back. I had found new and better clients. I made more money. I was much happier with my work. I started teaching. I won awards. None of that would have been possible had I not hit that lowest low of a thyroid storm and had to crawl all the way back out.
Living with Graves’ is not a walk in the park. I still have to listen closely to my body, and adjust to the bad days. But my battle with Graves’ has taught me that everything happens for a reason, and that sometimes cliches are more than cliches but do speak a universal truth - every cloud has a silver lining.
Click to Read Next: My Fears About Muscular Dystrophy
About the Author:
Antonina Mamzenko is a former lawyer and award-winning family photojournalist based in London, UK. Over the past 10 years, she has become one of the UK’s leading family photographers, documenting the life and adventures of hundreds of families from all around the globe.