This is what it’s like to live with a chronic illness most people have never heard of.

When I was first diagnosed with Temporomandibular Joint Disorder (TMJD) – I was relieved. Finally, I could get on with feeling better.

Boy, was I wrong…

The hardest part of living with an invisible illness is realising that no one will ever understand the daily struggles you face.

Chronic illness is more than just constant pain – it’s an endless cycle of anxiety, disappointment, insomnia, tears, and nausea-inducing pain meds.

It’s the overwhelming disappointment when a treatment doesn’t work. It’s learning to take time off and rest when you need to. It’s dealing with disapproving relatives, co-workers, and friends who just don’t understand. It’s dealing with disapproving doctors who think you’re just trying to get a codeine prescription. It’s dozens of tests, thousands of dollars wasted, and a whole lot of anger and exhaustion.

In 2014, the stress of the HSC was starting to take its toll on me, physically and psychologically. I was a nervous wreck and my body was copping the brunt of my anxiety.

During the day, I was clenching my teeth, leading to head-splitting migraines and searing facial pain. Nights were little better: I suffered night terrors and as a result, I was grinding my teeth so forcefully that it was audible from the next room.

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Jessica has suffered with TMJD since 2014. Image supplied.

As exams started, my jaw physically locked shut. I couldn't open my mouth any wider than 2cm. Eventually, I resorted to a soft food diet – say goodbye to chewing gum, steak, or anything remotely chewy. I was eating like an elderly lady in a nursing home.

It took three different doctors, a chiropractor, a physiotherapist, and two dentists to even get a diagnosis for my condition – and it's one you've probably never heard of.

What is TMJD?

TMJD is painful, compromised movement of the TMJ jaw joint. The temporomandibular joint is the "ball and socket" that connects the jaw to the temporal bones of the skull, allowing you to talk and eat.

Place your fingers on your upper jaw, just in front of your ears – as you open your mouth wide, you will feel the working and moving. In the case of TMJD, that motion doesn't function correctly. The teeth are misaligned, causing strain during everyday jaw movements like eating, speaking, smiling, sneezing and swallowing.

The misalignment of teeth and/or teeth grinding and jaw-clenching typically lead to TMJD, however other causes include muscle overuse, arthritis and in my own case – high levels of stress.

Queensland dentist Dr. Anne-Maree Cole describes TMJD as a painful conglomerate of multiple symptoms, which may include headaches, neck pain, facial pain, clicking or noise in the jaw joints, congestion, pain in the ear, and dizziness.

TMJD Symptoms
TMJD is described as a painful conglomerate of multiple symptoms. Image via Canva.

“The pain is recurrent and debilitating and it profoundly impacts the sufferer’s quality of life. Depression, irritability, difficulty concentrating and unrefreshing sleep are commonly encountered as well,” said Dr. Cole.

A lot of my initial experience with TMJD – a relatively unknown illness – involved research. If the professionals didn't have the answers, I would try to find them myself.

The options for relieving pain were varied and expensive. Some work, others don't.

And suddenly, every acquaintance became an expert on the disease of which they'd never heard of, constantly offering their 2 cents worth on what "miracle treatment" I should try next.

People told me to stop eating meat. Stop eating gluten. Quit sugar. Get Botox. Exercise more. Take more time off work. Smoke weed. Try acupuncture. Let God heal you in church. The suggestions were endless...

Jessica Staveley. Image supplied.

Treating TMJD

Of the many treatments I have tried and tested, two have proved more effective. Once a month, my chiropractor gives me intra-oral neuromuscular massage therapy. Yep, he pops on some gloves and massages the jaw joint from inside the mouth. It's awkward and painful, but it's a huge relief, releasing built-up pain and tension in the joint.

At night, I wear an occlusal mouth guard, which prevents me grinding my teeth at night. The device cost over $1,200 and it probably makes me look like a rugby player, but hey, it works.

Some TMJD patients require a 24-hour orthotic splint, which maintains the jaw in a muscle-comfortable position all day and night.

39-year-old Jessica Strauss, from the USA, has worn a 24-hour splint for 7 years. The financial burden of TMJD has taken a huge toll on Jessica and her family. She has spent $23,000 this year alone to repair and replace broken teeth and treat her TMJD issues.

"I pay for insurance every year but that doesn’t cover my needs at all. I feel guilty for all the money I have spent on my jaw that could have been used on my family. My son was almost two when this [TMJD] started, so he has never known me healthy," Jessica told Mamamia.

LISTEN: Wil Anderson speaks to Mia Freedman about living with chronic pain. Post continues below. 

37-year-old Kelly-Ann Ryan from Middlesbrough, England, is unable to work as a result of TMJD.

"TMJD has affected my life a lot... the pain in my jaw and my head stops me from working, socialising, being able to exercise, do housework or eat certain foods... I am isolated in pain most of the time," Kelly-Ann told Mamamia.

"It's migraines too – not headaches – with light, noise, heat and motion sensitivity and nausea. I was feeling like I wish I didn't wake up the next morning. It was awful."

Chronic illness support

For many, TMJD is totally debilitating. “Each person is an individual with their own symptoms and impacts,” Dr. Cole told Mamamia. “For some, the pain is constant, for others, it waxes and wanes. Many sufferers [lead] miserable lives. Relationships suffer. Personalities change. Suicidal ideation is not uncommon.”

Online communities like Facebook's TMJD forum became a great source of support and advice for me; a Facebook community of more than 10,000 fellow sufferers around the world taught me that I was not alone – despite how rare and unknown my illness is.

Living with invisible illness and chronic pain is tough. Most TMJD sufferers I spoke to have felt alone, depressed and misunderstood.

Fortunately, the more we speak about chronic illnesses the more awareness we create, and with awareness comes dedicated medical professionals who seek treatment options for patients, even for the rarest illnesses.

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