This blog post is by Vicky Roden.
It’s a privilege to be able to join with The Thyroid Trust during International Thyroid Awareness Week, 25 - 31 May 2021.
I'd like to start on World Thyroid Day, by sharing two films– one a piece of work made relating to my condition, and the other a fun workshop demonstrating how to make fondant thyroid butterflies.
Afterwards, on 7th June, I am looking forward to hosting a Creative Thyroid Cafe.
Both of the films originated in a project with the University of Birmingham, Centre for Systems Modelling and Quantitative Biomedicine SMQB, studying precision in Anti-Thyroid therapy, which was particularly important to me as I’ve been a thyroid patient for over twenty years. Initially I was seriously overactive, with my tests showing a function of ten times the healthy level. After ten years and a couple of different medications I underwent two doses of radio-iodine therapy and am now under-active.
I was 20 when I was initially diagnosed – for five years before that I’d suffered with severe anxiety and depression, including self harming and suicidal thoughts. I had a thyroid test just before I attempted to go to university, but never received the results until I’d dropped out and was talking to a Locum doctor about my continuous and constant sense of anxiety and doom - they asked “what medication are you taking for your thyroid?”. My response? “What’s a thyroid?”. The test done eighteen months previously showed I had a serious problem, and I finally began treatment. However, what I thought was the end of the issue was just the start.
Because nobody told me what a fundamental effect my illness would have on my life, and my ability to function. I had no knowledge of what the thyroid problem would do to me – many of my friends and family members thought I was a drug user as that was the only way they could understand my behaviour, and I couldn’t explain why I was acting in that way. I carried on like this for ten years, trying to live a normal life, getting a job, crumbling under the pressure, having to quit to recover, feeling better, getting a job, crumbling under the pressure… Eventually I began to have an adverse reaction to my medication and so underwent radio-iodine therapy. The improvement was near instant, and after two rounds of treatment my thyroid became underactive.
That was eleven years ago. I had an amazing therapist who helped me unpick the odd behaviours and lingering anxieties which I’d learned over the previous ten years. I was able to finish my degree, getting a first, and build a career as an artist. I’m still paying for the long period of ill health, mainly from the housing benefit which I’d claim when particularly ill and lose when I was trying to get a job, and still having lingering adverse learned behaviours. I’m still terrified whenever I have days of brain-fog, or an inability to express myself, or difficulty reading or writing. But that’s ok, because now I understand the condition far more – I’m determined to keep on going and make the best of life.
You’re not alone. You may feel like your ability to control yourself and your life is slipping, and you may find it near impossible to articulate your experiences to the people you care about, but there are amazing organisations like The Thyroid Trust that are helping us share our stories and advocating for patients so hopefully in the future others won’t go through the same feeling of isolation. Be kind to yourself, and never fear to seek the support you need - you absolutely deserve it.
About my condition
Fondant Thyroid Workshop
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