Living With an Invisible Illness: A Reality Most Will Never See

Having a chronic illness sucks. There’s no poetic way to describe it. And when it’s an invisible illness, one that people can’t see from the outside, it becomes an entirely different kind of battle. Some days, you function like everyone else. Other days, getting out of bed feels like climbing a mountain with no summit in sight.

I wouldn’t wish it on anyone.

To most people, I look like I’m living an ordinary life. I work, I parent, I show up. What they don’t see is the constant, underlying pain; the kind that sits with you quietly, every single day, no matter what mask you put on. It’s crying yourself to sleep, wondering what you did in a past life to deserve this. It’s waking in the morning, calculating how many pain medications you might need just to get through a normal day.

And the truth is, I’m still fairly new to this diagnosis.

For years, I was told it was “just anxiety,” “just depression,” or simply “in my head.” Eventually, I was diagnosed with adenomyosis — a condition where extra muscle and tissue grow inside the uterus and shed during menstruation. My specialist told me mine was one of the worst cases she’d seen. Of the three treatment options available, only the most extreme offered any real relief.

To put it bluntly: every month, my body was essentially going through the motions of labour. No exaggeration. The amount of tissue being shed explained why I needed oxycodone just to function during my period. But up until that point, most doctors had brushed me off — hormones, postpartum changes, or apparently me being “dramatic.”

At 31, I was told the only way to reclaim any quality of life was a hysterectomy. I was placed on the waiting list. Nine months later, at 32, I was rolled into surgery thinking, “This is it. This is the end of all of this.”

Surgery went well. But upon removal, the entire left side of my uterus was found to be covered in endometriosis. And in a way, I was relieved, finally an explanation for the constant, month-round pain. I was assured they had removed it all, and I could look forward to living a normal, pain-free life.

And for a little while, that was true.

Once I recovered, it was like a fog had lifted. I hadn’t realised how much mental space chronic pain had occupied until it was gone. I was clearer, happier, genuinely hopeful. I even went back to work just 48 hours after coming home from the hospital — something I probably shouldn’t have done in hindsight, but when you feel good for the first time in years, it’s hard not to jump back into life.

For six months, I had bliss. Six whole months of being pain-free.

Then the pain came back.

Slowly at first. Then louder. Then in ways I recognised all too well. Flashbacks hit me — memories of calling my husband to rush home because I physically couldn’t care for our children. I found myself reaching for painkillers more often, then stronger ones, then more again.

I knew something was wrong.

But when I returned to the doctor, I was told it was impossible. I was “cured.” The endo and adeno couldn’t return, they insisted. My pain, once again, was apparently psychological. They refused to refer me back to my specialist and sent me to another doctor who told me my brain was “wired wrong” from years of pain, making me think I was hurting when I wasn’t.

I left feeling dejected. Rejected. Back at square one.

Fortunately, my GP ordered an ultrasound, which revealed bursitis in my hip, explaining the difficulty walking and the inability to get comfortable. I was advised to get steroid injections every six months to manage it. Not exactly the solution I wanted.

Desperate for answers, I visited an integrative health specialist — six months of waiting and over $500 out-of-pocket. They told me the truth I already suspected: the endometriosis had almost certainly grown back, and I was unlikely to ever be fully “rid” of it. They recommended extensive hormonal baseline testing and a long-term management plan.

I started organising the tests… until my financial circumstances changed dramatically and everything had to be put on hold.

So now, I live on a sliding scale of pain. Some days are tolerable. Some days are unbearable. Every morning, I assess how many “spoons” I have — and on many mornings, I wake up already in a deficit. But I do my best. I keep going.

And despite the uncertainty, I’m determined to rebuild my life in a way that works for me. Slowly. Intentionally. One small step at a time. 

Because underneath all of this, I have an incredible family, a life I want to fully live, and a future I still believe I can shape into something meaningful — even if the journey looks different to what I once imagined.

I may not be pain-free. But I am hopeful. I am learning. I am adapting.

And I am not done yet.