On reaching a rock bottom, and on silver linings
I wrote this piece several years ago for the now-defunct online magazine The Kindred Voice. Here, I describe events that happened around 2014-2016 as I battled with Graves Disease - and the lack of awareness and understanding of it from people around me. With December being Graves Disease Awareness Month, I thought it would be good to bring the piece over here so it doesn’t get lost in the black hole of world wide web - but also as a reminder to myself that I can, indeed, do hard things even when it feels impossible.
It’s also interesting to see how my writing, my voice - and my understanding of myself - has evolved in the past 5 years. I (mostly) resisted the temptation to edit this piece, leaving as it was written back in 2019, even though I would probably write it very differently now.
It was also written prior to my realisation that I am, indeed, autistic. With hindsight, I believe that it was severe autistic burnout that led to my body, tired of dropping subtle hints, to finally give up on me and make a very loud point to force me to finally slow down. I could write more about this - and perhaps I will, in the future. For now, it is what it is.
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. I dropped more balls that I could count and my photography business has all but ground to a halt.
Bizarrely, at the time I didn’t realise there was anything medically wrong with me. I assumed that exhaustion, insomnia, and brain fog were what inevitably followed when a person is running a business while solo-parenting a small child who still didn’t sleep through the night.
Of course, it was not normal.
By the time I finally connected the dots and made an appointment with my GP, 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 despite eating constantly) - 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.
One glance from my GP, some urgent blood tests and a specialist appointment later, and 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 ill 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 - weirdly - 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.
Thanks to my thyroid medication, I finally had 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 - especially not at the time when these alternative options were not yet as widely available as they are now. But, to my surprise, 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 tribe.
I’ve always been a socially awkward introvert, 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 kind of 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 incredibly healing. Some of those people have since become my friends, 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 very bottom.
Prior to my diagnosis, I had been a 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.
Living with Graves’ is not a walk in the park. While I’m now officially in remission (if there’s even such thing when it comes to autoimmune conditions) I still have to listen closely to my body, and adjust to the bad days, trying to avoid reoccurrence of the worst of it. 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.
Look out for the symptoms of Graves in your loved ones. They will often be not able to spot them themselves, or make the mental connections required to call their doctor.
Symptoms include:
* weight loss, despite an increased appetite
* rapid or irregular heartbeat
* nervousness, irritability, trouble sleeping, fatigue
* shaky hands, muscle weakness
* sweating or trouble tolerating heat
* frequent bowel movements
* an enlarged thyroid gland, called a goiter
* bulging eyes or light sensitivity
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