Eighteen year-old Rosie Leishman tells Billie, in her own words, about her journey as a teenager discovering she has Grave’s autoimmune disease and hyperthyroidism.

The realisation you don’t need at 17. When you are younger with a “health issue”, you go about your days as if nothing is wrong with you. Because nothing should be wrong with you...

I didn’t even know what a thyroid was until I realised everything that made me me, all my thoughts, feelings, and anxieties, were dominated by this very unwell, single organ.

Being fifteen years old and fresh to teenage-hood, I believed that all of my feelings were ‘normal teenage’ issues. I decided the emotions that I was at war with everyday were my adolescent girl hormones that every fifteen year old battled with.

Now, nearly two years later, I have faced a harsh realisation of the importance of real health. The opportunities and sense of self that you lose when your health is stolen from you, and then what is given back, is of unparalleled significance to how you live your daily life.

In December 2019, four months into the ripe age of sixteen, I was diagnosed with Grave’s autoimmune disease and hyperthyroidism, after what I assume to be approximately a year of severe, and yet “unconnected” symptoms. Shaking, a large appetite, exhaustion, hot flushes, the irregularity and disappearance of my period, obsessive thought patterns around food and self contemptment around my body were just some of the symptoms I blamed on my love of coffee, my young age, or that I simply ignored altogether. 

But when you are younger with a “health issue”, you go about your days as if nothing is wrong with you. Because nothing should be wrong with you. And as far as you know, nothing is wrong with anyone else your age either. They are all perfect, leading lovely lives, and you pretend to do the same, but have this small very insignificant added factor of being sick as well, not realising it isn’t normal and you shouldn't be feeling as if you're being slowly swallowed into complete numbness.

Other people your age have no idea what a thyroid is, or what it does, and you only really figure that out yourself at the exact moment you are told that it has to be removed. This means when you say you aren’t at school due to your illness, they don’t understand how you really feel. To be honest, I don't blame them. I wouldn’t if I was them.

When I stopped menstruating during 2018 at the age of only fifteen, I went to see a doctor to double-check that everything was okay with my health. I was seen by a male colleague of my usual family doctor who told me that, being as young as I am, there was “no need to worry about anything unless I was trying to have kids”, which I obviously wasn't. So, I left it, didn't think twice about it and continued living normally despite having developed a brand new negative attitude towards my body and appearance, fighting a constant battle against symptoms that didn’t seem tough enough to be valid as ‘symptoms’, and upholding the reputation of being my constantly positive and energetic young self. It was just ‘who I was’. 

I went back to see my usual doctor six months later, having continued to not have a cycle. And after a round of blood tests, I was okay... except for one major red flag. My thyroid function tests were astronomically high, and I was told the ‘who I was’ that I thought was normal, wasn’t. I was overflowing with hormones, as if I didn’t have enough already being a teenage girl. 

After a full round, one whole year of increasingly heavy medications and severe side effects, I felt worse than I did before I knew that I was sick. I pushed my mind and body to limits not letting myself see I was struggling, I went to multiple doctor appointments with many different doctors a week and throughout lockdowns saw a real transformation in the way my mental health affected my body.

I felt alone and isolated and did everything I could to uphold my bubbly-ness at school, going home in shambles, exhausted and the antagonist to the person I had been all day. My mind never stopped, never ending feelings and thoughts were all consuming, my doctors suggested journaling could be a source or relief. I disregarded the idea and ignored that advice due to my past experiences of overwriting and overthinking what words would flow out of me.

Declining from month to month, confiding in my unconditionally supportive mum and dad, we came to the conclusion that medication just wasn’t a team player, and I would need to have surgery.

I was utterly relieved to have surgery because finally it felt serious. Finally, it sounded real to the people who didn’t understand what I had been through over the course of that single gruelling year.  My whole thyroid would be taken out, I would have a permanent scar on my neck, but my never-ending denial of how unwell I truly was would be valid, all problems solved. I was told ‘you will feel like yourself again, normal again’, but that was my biggest fear. I didn’t know who that was, what was my normal self? I had been abnormal for two years now, and could hardly imagine who my normal really ‘was’. But being on fourteen tablets a day at the time, the idea of taking one or two consistently with no side effects, to replace the hormone without mucking around, was music to my ears. These thoughts circulated my headspace for months and I finally took to journaling.

Writing became a metaphor for my mind as the pages and pages that flooded from me were overwhelming, the never-ending feelings that formed letters that formed words that then formed sentences to pages, would now describe the proof I was looking for that my illness was real. 

Numbness, brain fog, exhaustion no sleep could fix and the crave for control over my own body got worse and worse approaching the surgery, and I felt a wave of fear and yet somehow also eagerness for the rest of my life to start. A life which, up until now, felt like it had been on pause.

Having this problem removed entirely was all I wanted, but the threat of being ‘myself’ again was just as scary. I was scared to be better. Pulling out of all of my end of year exams, I disappeared for the month of November, practically hibernating at home. I wanted to hide, I felt a sudden tsunami of anxiety of the unknown, fear that people who knew me now would remember me like this, this person who feels so far from whoever herself really is. I felt this wave hit its hardest the day before surgery, when my hollow shell of a body couldn’t keep going like this. I was washed over with an urgency to feel better and on the 19th of November 2020 had a full thyroidectomy. 

It took exactly a month to get back on my feet, and feel better than the self I once knew. Living a lengthy summer dream, I felt like a different person. I was positive about myself and my future, I didn't dip or crash whenever I had been busy, I was so much happier and healthier, and my levels had normalised for the first time since I was fifteen. Things like my eating and exercise habits were balanced again and that ingrained fear of becoming the self I didn’t know once again faded as I just recovered and felt simply better. 

Now into the full swing of the year, I have continued to learn and grow. I have bad days, like everyone does, but I also have my bad seasons. The usual frantic nature of life has picked up again, and I struggle to let myself rest or stop.

Since surgery I have been telling myself that I am finally ‘normal’ again, no more excuses, I am a normal teenager. And sadly, a normal teenager with no health issues to blame my emotions on anymore. 

But what I have been told time and time again, and still fail to acknowledge, is that I still am new to this. My body has had an organ removed and is still learning to live with artificial hormones. This dictates daily mental battles with myself: are my feelings valid or not? Am I now just making excuses? Will I never be satisfied or happy? I hoped I would feel better since surgery...and I do, so why am I still not considered well? Why do I still struggle?  

I still can’t answer these questions because I am only just now asking them of myself. And still, I have no answer. Right now I am feeling vulnerable, isolated, deflated. Maybe if I write this piece again in another year I will be able to look back at the fleeting scenes of love, hugs, laughs and beautiful moments I have had the pleasure of navigating in the seven months since surgery. I will be able to say in full confidence that there is hope, that I am glad I have been through this, and now wear a smiling looking scar on my neck.

Yes, the never-ending pain filled journal pages will stay with me forever like a tattoo of that time, but just like my ever changing thyroid levels, and something my mum always says, ‘nothing stays the same’. There are even longer journal pages filled with euphoric happiness and bliss to be written in their own time.