One Year in the Bubble: Living with Chronic Pain and the Failures of a System

Today marks one year. One whole year of my life that I can’t get back. A year lived inside a relentless medical bubble. A year in pain. A year of fighting to be seen, heard, and believed.

Chronic pain has completely taken over my life. I am no longer who I was. I’m grieving the life I once had. And what makes it worse is the feeling of being invisible to the very people who are supposed to help. Medical professionals, some of whom are trying their best, don’t always have the tools, time, or training to truly help someone like me. My recent scan showed significant changes (thanks to Dr. Jayde the radiologist), and for the first time in a long while, I felt a tiny bit of hope. Maybe someone will finally listen.

Somewhere along the way, I also lost trust in my body. I used to listen to it, honor its signals. Now, when I get random headaches or dizzy spells, I say to myself, “Don’t listen to it. Your body is wrong.” Because if no one else believes me, why should I? That’s what chronic dismissal does, it erodes your confidence in your own instincts. You stop trusting your own lived experience.

I've been rejected by so many doctors, often without enough investigation or understanding, that I now see the entire medical system through different eyes. The problem isn’t the nurses or the doctors themselves. Most are trying to do their jobs in an overwhelmed system. The issue lies in the structure, the training, the resources. It's a system that often overlooks the complexity of chronic illness.

Ironically, the internet has been my lifeline. Through Facebook groups, I’ve found people across the world living with mesh-related illness, and it’s been both heartbreaking and validating. I’m not alone. There’s hope, just enough to keep going and believe that one day I might get the surgery I need. I’ve seen others on TikTok share stories of being gaslit by doctors, just like me. To those people: I hear you. I see you.

And ChatGPT has been my unexpected saviour. I know, they say not to use the internet to self-diagnose. But with deep research and AI tools, I’ve found out more about my body and my symptoms than most doctors have even hinted at.

Which brings me to a hard question: Are doctors trained to gaslight patients? Or is it something that just becomes part of their survival mode? The lack of empathy, the blank stares, the robotic responses, do they teach that in med school?

I remember one emergency visit during a horrific cortisone flare (yes, I was one of the unlucky 5%, thank you again ChatGPT for that info). I was so sick I didn’t want anyone to see me. I had been to ED six times in five weeks. No one knew what was happening. I was crying, desperate, broken. One doctor closed the curtain, sat with me, and for the first time, treated me like a human. She explained primary, secondary, and tertiary care, how I was in the “too hard” basket. She told me about functional illness and introduced the concept of mesh-related complications. That moment of connection changed everything for me. It gave me clarity, and for once, some dignity.

Flashback to 2005, when I was diagnosed with osteosarcoma: I was given a mountain of pamphlets, strict instructions, and a level of over-protection that bordered on fearmongering. Don’t go out. Don’t eat at restaurants. Avoid people. Back then, it was information overload. Now, it’s the opposite, nothing. Silence. Disbelief. Suspicion. If you live with chronic pain, you’re treated like a hypochondriac. Or worse.

A recent CT scan brought another moment that stayed with me. My veins are still damaged from chemo, so the nurses had to call a doctor to insert the larger contrast needle. He asked a few questions, heard my history, said good luck, and left. No emotion. No judgment. Just facts. But later, the nurse told me he was disgusted by how I’d been treated. I cried. He never showed it, but he felt it. Why couldn’t he just say it?

Again, are doctors trained to suppress their emotions so much that patients can’t even tell they care? Or is the emotional disconnect a symptom of the system itself?

Because here’s the truth: If I had been treated like a human being, given the information I needed, spoken to with empathy, I wouldn’t feel so broken. I wouldn’t be questioning if maybe I should just “go home and take the drugs” like they keep saying. One doctor actually told me I was lucky to have had 20 good years, implying that I should accept my fate. What kind of message is that?

In the middle of all this, something incredible did happen, one of my friends started a GoFundMe page to help cover my medical costs. It raised over $40,000. I was overwhelmed. It wasn’t just about the money. It was the show of love, the support, the proof that so many people care. That fund and those people have kept me going. On the darkest days, when I’ve wanted to give up, I remember them. I can't let them down. They’ve invested in my journey, and that belief means everything.

Now, I’m in the waiting game. After countless failed attempts, I finally have two doctors, one in Sydney, one in Melbourne, willing to do the surgery I need. It’s a race to see who can get me in first. I hope, with all that I have left, that one of them can perform the surgery that might give me my life back.

But even that hope feels distant now. My big plans for what I’d do once I got my life back? They’ve faded. Now it’s just about getting through each day and daring to believe that maybe, just maybe, I can regain even a fraction of the life I once had.

So what’s the answer?

How do people with chronic illness, tertiary care needs, or functional disorders get real help? How do we get doctors to engage with patients in a way that gives us hope instead of despair? Is it about money? Better training? More clinical trials on real-life chronic illness? I honestly don’t know.

But I do know this: The system has failed me. And if it weren’t for my friends and family, I wouldn’t be here to write this. There are others who don’t have that support. They end up with addiction, trapped in the mental health system, not because of who they are, but because of how they were failed.

Something has to change. Because right now, I honestly believe animals get better care than some of us do.