Thyroid conditions affect every aspect of an individual: mental and emotional health, behaviour, academic performance, physical appearance and development, including sporting prowess. This can be extremely frustrating for the affected individual. The underlying frustration relating to the condition can be exacerbated by taking some time to be diagnosed, the length of time it takes for treatment to take effect (up to many months), and medication dosages needing to constantly be revised to meet the demands of a growing body.
After their treatment has stabilised (which can take some time, in some cases over a year) people with thyroid conditions can generally function like a healthy individual. However, medication does not replicate the functioning of a healthy thyroid. This means there will be some days (or weeks) where the person’s symptoms return. This is additionally frustrating as there are no short-term remedies for these symptoms.
Children with thyroid conditions can be ostracised by their classmates. Their conditions can cause physical symptoms (such as weight gain or dry, itchy skin). and behavioural problems (such as hyperactivity). Frequently these children also struggle to keep up in both academic and social situations while the thyroid is not treated, although the academic skills return to normal as hormone levels normalize. This can cause them to be labelled (as well as feel) ‘stupid’ or ‘slow’.
Effects on those close to the child / young person
Before diagnosis, the first thing parents, siblings and friends of a hypo- or hyperthyroid child may notice is a change in the child’s personality or activity levels. Hypothyroid children can be labelled as “lazy”, and hyperthyroid children can seem hyperactive. These changes in personality can be confusing to the child and to those who know the child. These personality changes can also cause friction between siblings. Parents may sometimes struggle to ensure that their child takes their prescribed medication.
“In their shoes” – stories from children / young people with the condition
“It’s hard to say at what stage having a chronic illness was most socially difficult to bear. For a long time I didn’t know that I was sick, and this made things bad for me because no one – including myself – could understand just why I had problems with things that they found so easy, like PE. Kids are always trying to label you as something, so when I did find out that I had Graves’ Disease, people seemed to nod understandingly and turn their heads away. I always got queer looks. My friends didn’t like hearing about it, and I couldn’t comprehend why they were so discomforted by it. Most people don’t like to be reminded of the mortality of human beings, and so in a way I guess they were kind of scared by it. I mean, if it could happen to me, why couldn’t it happen to them?
For the most part people understood, once they were told, why I couldn’t do things like PE and sport and why I had to take tablets when everyone else didn’t. But they still didn’t want to know about it. I learnt that the best thing to do was keep my mouth shut. Sometimes I felt that my friends thought I was faking, or making it into something bigger than it actually was, because they couldn’t actually see just how sick I was. It wasn’t like I had a plaster on my arm or use a wheelchair, the battle was an inner struggle. I remember telling my friends that I was going to have surgery, and the only thing they could think to say was, “really?” as though they weren’t really interested. Maybe that says a lot about my relationship with my friends at that stage, but maybe it says a lot more about how people of that age react when confronted with disease.
When I had my surgery I was pretty sick for a long time. One of the things that hurt me most was that only two of my friends came in to see me. I didn’t actually want to see them, because I was too sick, but it was the thought that counted. I had about two weeks off school, and then went back for half the day a few days a week. For a while my friends were quite understanding and they did things like waiting for me when I had trouble finding the energy to get up stairs. People I didn’t often talk to would come up to me and ask me how I was doing. But after a while the novelty wore off and after about a month my friends were telling me things like, ‘You’re such a slackass, you could come to school on time, really, if you felt like it.’ I couldn’t, but they didn’t want to listen to that. Teachers were sometimes just as bad, not really believing how sick I was. Nevertheless, as time went on I got better, and by that time I had long become used to dealing with people who didn’t want to have to face reality.”
“Between the ages of 15 and 18, I suffered from several bowel problems, two of which resulted in major surgery. After the final surgery, I never entirely seemed to recover. In fact I seemed to get worse. I never regained my weight that I had lost from laying in the ICU, regardless of how much I ate. On average, I was eating about 9 FULL MEALS per day, but remained at 53 kgs (my normal weight was 65 kgs). My eyes were always large and sunken, my skin always dry and pale. I would go out clubbing with my friends and find that I could only dance to one or two songs, before getting a stitch. I would come off the dance floor and my legs would be shaking because my muscles were so weak, even though, all my life, I had been a dancer, and had always had a rather high level of fitness. Also, my heart rate was through the roof. At night I could not sleep because my heart was beating so hard I could feel and hear it in my chest. I could never get enough air into my lungs. And as for my home life I was not myself. I was living with my boyfriend at the time. I had difficulty finding a job, so it was my duty to look after the home while he was at work during the day. But I simply couldn’t. Mentally, I didn’t have the strength to complete even the simplest of tasks, such as doing the washing. I wasn’t deliberately going out of my way to slack off. I simply did not do it, and for no particular reason. I felt guilty about it, but I had no interest in my own guilt. I had no interest in ANYTHING except food and sex. Emotionally, I must have seemed psychotic. Because my sleep patterns were so (for lack of a better word) ABNORMAL, I’d find myself drifting off to sleep for an hour, only to wake up and start screaming at my boyfriend for not waking me up so I could watch a TV show. And the depression! Never had I felt so much contempt, resentment, bitterness and self loathing towards myself. I REPULSED myself. Everything that was wrong with the world was my fault as far as I was concerned, even if it wasn’t… and the things that really were my fault, I felt no desire to repair, because of the disinterest. I was prescribed anti-depressants, and was even tested for schizophrenia. To make matters worse, my boyfriend had had enough, and kicked me out of our home with no money and no means of transport. The nearest place to stay was my grandparent’s home. I was there for a couple of months, while my mother was in Europe.
In my grandparent’s home, my emotional instability sky rocketed. I’m so ashamed for the way I behaved at the time, but in hindsight, I had absolutely no control over it. The only change in my symptoms was that I gained weight… too much. I went from 53kgs to 71kgs in under two months. When my mother returned from Europe, she recognised the symptoms immediately, having suffered from hyperthyroidism herself, in her mid 20’s. She took me home, and within a matter of days, got the Doctor to order tests for thyroid function, and had received the results. My thyroid levels were sitting at 80 (YES, 80!). I was diagnosed with near lethal Graves Disease, as well as a severe Iodine imbalance, made worse by my cravings for salt. I started seeing a specialist in Sydney, who immediately started me on a strong course of thyroxine reducing medication (as well as heart medication), and eventually, prescribed radiation treatment, in December 2006. I had been living with Hyperthyroidism for almost 2 years, but had only been diagnosed 4 months prior to the radiation treatment. For approximately a month after radiation, I was a normal, healthy 19 year old girl. I had SO much energy, and was behaving like a regular person. Then out of nowhere, I was suddenly hit with allegations from friends and my boyfriend at the time, that I was too emotional, high strung, losing weight, irritable and lazy. “HERE WE GO AGAIN” ran through my mind each time another symptom came to light. I was tested again, to find that the radiation had worked a little too well, and I now had hypothyroidism, just like my mother (who had surgery instead of radiation treatment, when she was diagnosed as Hyper). My mother and I are now prescribed the same amount of thyroxine of 100-150 micrograms per day.
It’s not easy living with thyroid disease. I’m in a constant battle with myself, mentally and physically. Some days I can’t even bring myself to leave the house, whereas on other occasions I can go out and party for an entire weekend with little to no sleep in a 72 hour period. Either way, I know I’m never going to be myself again, which I can deal with. My biggest concern is the high likelihood that I’m going to pass my condition onto my daughter, as my grandmother passed it on to my mother, and my mother to me. With each generation, Graves Disease has kicked in younger, and with more ferocity. The best I can do is pray that we are able to identify it in my daughter, and treat her, before it gets the best of her. ”
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“I was born with a dead thyroid gland back in 1966 and I was seven days old when a doctor realised I had a dead thyroid gland. I had a lot of learning problems while growing up, I had to go to remedial gym to get my co-ordination right and to speech therapy but I tried to excel in everything I did while I was in primary school.
The worst thing as a child was taking my thyroxine tablets just before I went to bed. I also had to make sure I ate all the right things, and my parents made sure I wasn’t doing the wrong thing to myself like overeating and putting a lot of weight on. I do have a bit of weight problem but not as big as a lot of people have.
My whole family and I are now living in Queensland but everything wasn’t so easy when we moved up here, I had to change school, only lasting to Grade 10, then going on unemployment benefits. When I was just about to get a full time job I had a very bad bicycle accident in 1986. The medical profession then informed my parents I should have been taking my tablets in the morning time.
Not only did my family have to try to teach me to do the right thing as a child they had to help me again as an adult. I’m happy to say I’m now in my early 40’s and I’m very careful on what I should eat and what I shouldn’t eat. Also I’m trying to keep myself very busy by doing public speaking in both public and private schools about being bicycle helmet safe all the time, as well as going to local Toastmasters club to assist in my public speaking. I also keep myself very active by going to play ten pin bowling once a week and learning rock n roll dancing. Also I’m trying to do the right thing by myself by going to TAFE college to improve my reading and writing and eventually I intend to do a writer’s course in a year or two, so I can become a writer or even an author one day.”
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