My irritability was severe in manifestations

Many times I felt like jumping out of my skin

The profuse sweating and heart palpitations

Added to the weight loss that made me so thin

All this time I battled depression

The loneliness, sadness, low self-esteem, and anxiety were staggering

My brain eventually exploded from all the tension

But the support from my family and counsellors was unwavering

– Linda Oforka's poem “Irritability”, taken from the British Thyroid Foundation’s webpage

We were queuing to get our weight checked. A young woman who was standing right in front of me, I will just call her Alda, whispered, “I hate weight checks, don’t you?”

Having being bullied about my weight for more than 10 years, I couldn’t agree more, so I smiled and nodded.

We sat next to each other. Alda looked a bit uncomfortable and tried to cover her face (or eyes) with her bangs. As soon as we made eye contact, I began to notice that she had bulging eyes – a condition that can occur as a result of a thyroid condition. Alda, a young journalist, was in her late 20s and had a seven-month-old baby.

“Why are you here?” she asked to start the conversation. I gave her a short answer, “Uhm…a regular thyroid check-up.”

The next move was totally unexpected. She suddenly hugged me.

“Alhamdulillah [Thank God]!" she said. "Oops, sorry…no, no, please don’t get me wrong. I’m just happy to finally meet someone with the same condition, not that I’m happy you’re having a thyroid condition. Hypo [hypothyroidism] or hyper [hyperthyroidism]?”

“It’s OK. Hyper,” I responded.

The next half an hour was a new learning journey for me. Living abroad, I found that I could easily reach out to a community support group for people with thyroid disorders. Through online chat groups, Facebook pages and community gatherings, we could talk openly about our condition and exchange stories and experiences in managing and negotiating health and everyday roles.

It is different in Indonesia. Alda had little knowledge about thyroid disorders and had never been in touch with a community of people living with thyroid diseases. She was stressed and confused.

“I can’t sleep well, easily get tired, my hands are shaking, I am experiencing shortness of breath, and I can’t concentrate. And now, as you can see, my eyes are like this [bulging]. How come your eyes are OK? Do you work?” She bombarded me with all of these questions in one breath. “Do you feel stress?” she asked.

“Yeah, I used to. I mean, I once felt depressed and stressed.”

She sighed and take a deep long breath, “How do you manage it? My husband, my mother – I feel sorry for troubling them. My mother has to take care of my son now since I constantly feel tired. I used to be able to work overtime and travel to different cities. Now, chasing the bus makes me tired and this tremor disturbs me. My body will be showered with cold sweat without reason. I got embarrassed one day; my clothes were all wet while I was supposed to give a talk. A friend of mine kept saying, “Are you nervous? You’ll be fine.” God, I’m not nervous! After I was diagnosed with thyroid, my husband decided to drive me to the office and pick me up later in the evening. So much trouble. I really miss my independent self.”

Alda is not alone. I used to teach two classes a day and was still capable of managing other tasks or attending a meeting later in the afternoon. This routine suddenly got disrupted due to my thyroid problem. Before I knew that I had hyperthyroidism, finishing the first half of my first lecture was really a challenge. Short breath, tremors, cold sweats are some common symptoms that people with hyperthyroidism like me and Alda have to deal with.

This health condition makes me very uncomfortable. It disrupted my identity, changed the way I present myself and manage my life and the way I interact with others.

‘We’re not being emotional’: Stigma and the negotiation of identity

Globally, thyroid disease is the second-most common endocrine disorder after diabetes. In 2015, Indonesia was identified as the country with the highest incidence of thyroid disease in Southeast Asia with 17 million people diagnosed with thyroid disorders according to an IMS Health Survey.

This number, according to experts, could be higher, considering a lack of public knowledge about the disease and its symptoms, which leads to high number of undiagnosed thyroid cases. Compared to coronary heart disease or stroke, thyroid disease is less common. Thyroid disorders pose complex challenges for both women and men and impact one’s life and identity.

In Indonesia, thyroid risk has been shown in both men and women, with women (17 percent) higher than males (8 percent). Similar to Indonesia, the American Thyroid Association says that up to 60 percent of those living with thyroid disease are unaware of their condition, with women being five to eight times more likely than men to have thyroid problems. According to Johns Hopkins, the imbalance in thyroid hormone levels may affect a woman’s body in various ways. It may cause puberty and menstruation to occur abnormally early or late, and it may affect reproduction since an overactive or underactive thyroid may also affect ovulation.

“I don’t want people to perceive me as constantly complaining, but I don’t know why. I just feel tired all day. Always tired and weak,” a friend of mine, let’s call her Tanti, told me about her struggle with hyperthyroidism. Being financially independent, Tanti who works in a creative sector, found that she felt worn out. Restlessness leading to crushing fatigue, a rapid heartbeat and bulging eyes, which she said disrupted her self-confidence, were symptoms that she had to manage on a daily basis.

Lack of awareness and knowledge causes people to easily judge individuals with thyroid as having stress or depression, being emotional or lazy. Support from one’s partner, family members and communities – in my experience – is crucial to help individuals with thyroid disorders gain emotional strength, regain self-confidence and feel positive about themselves.

The significant burden of thyroid disease and the role of thyroid support groups

January is thyroid awareness month, and I would like to point out the importance of support and having networks of support (both online and offline) for people with thyroid disorders, especially women.

Sociocultural pressure that puts high expectations on women to get pregnant as soon as they are married may quiet the voices of women grappling with the disease. In a modern society where there has been an increasing emphasis on the body as a source of well-being, the picture of a fit, muscular, slim body represents the perfect image of a healthy individual. This certainly leaves no space for those struggling with seemingly inexplicable changes in weight – one of the most common signs of a thyroid disorder – to speak out about their challenges.

Weight gain may signal low levels of thyroid hormones, a condition called hypothyroidism. In contrast, some people may lose weight unexpectedly, a condition known as hyperthyroidism due to the fact that the thyroid produces more hormones than the body needs. Being perceived as careless (adopting a “wrong lifestyle”), lazy and lacking motivation to live a healthier life – which are identified partially by physical appearance and membership at a gym – I have to constantly negotiate my identity and public judgment about my body.

Fatigue is a common symptom of thyroid disease that often causes debilitating, relentless exhaustion that impairs individuals’ daily functioning. In addition, individuals living with thyroid disorders may experience emotional disturbances, mood swings and anxiety that they often cannot communicate to others. A thyroid disorder can also cause changes in one’s appearance – for example, changes due to thyroid eye disease, weight loss or gain, or the loss of hair – which can contribute to feelings of low self-esteem. The best way to understand how debilitating thyroid disease can be is to listen to those who are suffering from it.

Increasing public awareness about thyroid disease and expanding networks of thyroid support groups, in my opinion, are two crucial things that we have to do to educate the public about thyroid disorders and to reduce stigma about the disease. Thyroid disease support groups and discussion fora provide space for patients, caregivers, volunteers, health providers and the public at large to talk, exchange information and share positive thyroid experiences with others.

The ability to talk openly about their health condition helps people with thyroid disorders regain their emotional strength, renegotiate their identities and roles and – if I may say – heal, knowing that they are not alone. (kes)

***

The author is a health communication scholar and researcher, diagnosed with a thyroid disorder.

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