‘Everything looked normal to the surgeon.’ I felt helpless. My fight to find what was wrong was nowhere near over.’: Woman finally diagnosed with Hashimoto’s disease, ‘Be your own advocate’

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“As I sit here beginning to write one of the most relevant stories of my life, the last 5 years are flashing right before my eyes. The hospital admissions, the IVs, the needles, the doctors’ appointments, the surgeries. Everything. The very things that have shaped me into who I am today, the very reasons why I am sitting here writing this. But that’s getting ahead of myself, so let’s go back to the start.

I was 7 years old, sitting on a hospital bed with my mom’s arms wrapped around me. I was weak, my eyes were filled with tears, and I was being tested, an unfortunate but very normal reality for me. I was always uncomfortable, struggled to digest any food, and I had a cold or infection many days of the year. I was sick. After years of testing, I was finally diagnosed with Selective IgA Immunodeficiency, which is when your body doesn’t produce IgA antibodies. This can affect many aspects of your health, such as autoimmune disease and reoccurring infections and illnesses, alongside severe gluten intolerance, which wasn’t as common back then.

I very quickly became the kid who couldn’t eat anything at birthday parties, the kid with the weird lunches, and the kid who couldn’t go on sleepovers due to my pain levels. Eventually, I found some relief from my symptoms, a relief every kid deserves, that allowed me to actually enjoy my childhood again. But then high school happened. My body changed and so did the state of my health. I went downhill fast. And all of a sudden, I was passing out during class. I couldn’t stomach any food and I felt unwell all of the time.

Courtesy of Kate Henry

At the age of 14, everything changed. My life was flipped upside down and I didn’t know who I was anymore. I was replaced with the constant anxiety of when I was going to be sick next, severe pain, weakness, and chronic fatigue. So there I was, 7 years after my first bout of health concerns, reliving all of what seemed to be my past life experiences and more. The testing began again. The disbelief from the doctors and the loneliness began. Again. All while I was fighting for answers, I started to lose weight, missed most days of school, and was struggling through every single day. I remember feeling so lost and confused, like things were never going to get better for me. My mental health began to decline, and I was left with anxiety and disordered eating. I spent my days grieving my past life, wishing I wasn’t in the situation I was in, and struggling to come to terms with my new self.

Courtesy of Kate Henry

Yet, slowly but surely, we began to make progress. I switched doctors and found one who truly cared. I pushed for more testing. I went through surgeries, MRI’s, endless amounts of blood tests, and more. My heart broke when most of the tests came back clear. After my laparoscopy surgery, I remember waking up in the recovery room and straight away asking the nurse beside me, ‘Did they find anything?’ My anxiety was through the roof as she walked away to check the notes. I had been relying on this surgery to give me some kind of answer. Endometriosis or not, I was hoping they would be able to tell me why my body is the way it is. The nurse smiled at me and said, ‘They didn’t find anything. Everything looked normal to the surgeon.’

Courtesy of Kate Henry

For anyone else, this would be considered good news, but for me, I felt helpless and confused. I vaguely remember smiling at the nurse, saying, ‘Thank you,’ and then turning the opposite way, pretending I had drifted back off to sleep. I was tearing up, knowing my fight to find what was wrong was nowhere near over.

A few months later, I was diagnosed with IBS and worked with a dietitian on that. I suffer mostly from chronic bloating, chronic nausea, and debilitating pelvic pain. I found some relief from lifestyle changes and put my absolute everything into taking control of what I could, including seeing a psychologist for the mental toll chronic illness was having on me. I was still unwell and was progressively getting physically worse, which resulted in not being able to sit my final school exams, as my cognitive function was nowhere near healthy. I couldn’t enjoy all of the last days of high school.

Courtesy of Kate Henry

I was at a point where I was so fatigued, I slept at least 15 hours a day, and my head constantly hurt, alongside my whole body. When I got to this point, I was sent to do thyroid tests, which showed I have Hashimoto’s disease in which hypothyroidism was occurring. Hashimoto’s disease is an autoimmune disease where the immune system mistakenly attacks the thyroid gland. This inflammation can stop the thyroid gland from producing enough hormones. This lack of hormones ends up affecting your bodily functions and organs including your brain, heart, digestive system, reproductive system, and more. Receiving this diagnosis made so much sense. All of the random symptoms I was experiencing pieced together like a puzzle. The brain fog, cognitive problems, chronic fatigue, irregular temperature, hair loss, weakness, and a puffy/swollen body and face were all signs my thyroid wasn’t okay, and we had finally listened to it. Receiving this diagnosis reassured me that my body was struggling and now there was an explanation as to why.

Courtesy of Kate Henry

It’s now been over a year since my Hashimoto’s diagnosis and like many, I haven’t seen much improvement once starting my medication. To this day, I am still struggling with my treatment. Because I was still ill, it meant the testing continued and around 6 months ago, I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). This condition affects my autonomic nervous system and I struggle with the symptoms it brings daily. I’m currently still figuring out how to manage this complex body of mine, but I know I will get better because I have to. I want to.

Courtesy of Kate Henry

My story has made me strong, determined, and most of all, in a strange way, positive. Don’t get me wrong, no one wants to be sick, no one wants to be in pain, but sometimes our bodies choose what happens and it’s not up to us anymore. Sometimes we simply cannot control everything like the way we think we can. But the choices I have been able to make over the last 5 years have been impacted greatly by my chronic illnesses. Every decision, big or small.

I often think about what life would look like if I wasn’t ill. How would I have lived my life differently? The truth is, sometimes I wish for it. But I know deep down, I have been given these experiences for a reason. They gave me a voice that can help so many, a voice that can change the way chronically ill individuals are viewed in society. Chronic illness took a lot away from me, but it also gave me so much. It gave me a kind of strength I didn’t know was possible, experiences that can help others, and a community filled with kindness. This community is the reason my pain has a purpose.

Courtesy of Kate Henry

A family member once told me, ‘It’s hard enough being a teenager, let alone a sick one,’ and that single sentence has stuck with me over the last 5 years. It’s been my driving force to make a change, for all of the teenagers experiencing chronic illness. Teenagers already have so much to worry about already without adding in the extra pressure of our health. For those who are chronically ill, our health interferes with every single normal teenage experience everyone else around us is having. But when I was confronted every single day with ‘missing out on the normal experiences,’ it pushed me to grow, to find although my life experiences are not the same as everyone else’s, they are just as important, and I am strong because of them.

Your illness does not define you. You may miss out on normal experiences, and sometimes it’s not fair. But you are strong, you are brave, and most of all, you can and will have a fulfilling life with chronic illness. This last year has shown me the drive I still have in me. Someone close once said to me, ‘Being chronically ill will never be comfortable because our body is struggling. But if I can just do my best in the situation, I have been given, I will be okay.’ Every day, I do my best to do exactly that. The amount of respect I have for my body after living through these experiences is unimaginable.

Courtesy of Kate Henry

If you are sitting, reading this story, thinking it relates to you, then I have one thing to say: I’m proud of you, I believe you. I see you, and I care about you. For many living with chronic illness, we can go through years of not being believed and being judged. We don’t receive the help we deserve. We are told it’s in our head or there’s nothing more they can do for us. I am sitting here telling you, I believe you. Continue to fight for your answers because there truly are amazing doctors who care. Be your own health advocate, and get the help you deserve. I will never stop fighting for you too.

My battle is nowhere near over. I accept that because I know my health is most likely something I will continue to struggle with forever. I know I will be okay, because I know I am strong. And you are too.”

Courtesy of Kate Henry

This story was submitted to Love What Matters by Kate Henry from New Zealand. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from the chronic illness community:

‘We’re letting you go.’ I was too sick to work. They bullied me for months and couldn’t handle my illness.’: Woman fights for mystery illness diagnosis, ‘I am chronically strong’

‘So she’ll always be sick?’ I leave the office with an answer but no cure. ‘I’m not dying. I’m just 16 and past my prime.’: Chronic illness warrior battles lupus and fibromyalgia

‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle

‘My doctor said, ‘It’s just part of being a woman. You have a lower pain tolerance.’ I was nicknamed ‘drama queen.’: Young woman diagnosed with endometriosis after 7 years of pain

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