Help, My Practitioner Left Me

Navigating Change in Chronic Invisible Illness Care

This week I’ve been reflecting on several conversations I’ve had with patients around the role of practitioners in navigating chronic invisible illness.

One theme that stood out was the emotional impact of losing access to a practitioner who has been helpful. Sometimes this happens suddenly. A practitioner you trusted to guide your health journey and who helped you feel truly heard, is no longer available. When this happens, it is not just inconvenient. It can bring up fear, anxiety and grief.

I can relate to this.

Recently, a practitioner I had been working with unexpectedly became unavailable before I was able to book a follow-up appointment. I was around 20 months into a 24-month programme. I had been making progress, but I knew that I needed some direction moving forward. I was unsure whether I needed to keep going with my current plan, make adjustments or go back to the basics again.

But then suddenly, I couldn’t book my follow-up.

This was triggering for me. I had invested significant time, finances and hope into working with that practitioner. I found myself wondering whether I should just keep doing what I had been doing indefinitely. But some of the strategies we had implemented were restrictive. They had been helpful for a season, but they were not necessarily something I wanted to or should continue long term without guidance.

There was also fear around making changes without my practitioner guiding me.

What if I made the wrong choice?

What if I regressed?

It helped me reflect on a question many people with chronic invisible illness face, what do you do when a practitioner suddenly leaves?

When a Trusted Practitioner Is No Longer Available

When this happens, it can feel destabilising. This is especially true if your practitioner has been one of the few people who understood your condition, listened carefully and helped you feel safe enough to make progress.

For me, the first step was to stop and celebrate the progress I had made. I had to start from a place of gratitude for the support that I had received. I find this is always helpful when navigating uncertainty, stop, reflect and celebrate what has changed over time, even if it’s small.

I had to ask myself:

What genuinely helped me?

What should I continue doing moving forward?

What had I learned?

Sometimes we learn more about what is not working than what is working in the journey to restoring our capacity, but this is still vital information.

What might I need to change?

Who else could support me in this next season?

Sometimes practitioners leave. Sometimes it happens unexpectedly. Practitioners are human. Their circumstances change. They become unwell, move location, reduce their hours, change direction, become unavailable or no longer have the capacity to provide the level of care they once offered.

As many of you know, I have also been one of these practitioner with changing life circumstances. When I moved overseas, many of my patients had to navigate a change in care and then, unexpectedly, I returned to Australia and was able to reconnect with many of them again.

Things change. Sometimes in ways we cannot predict. But it has taught me an important lesson.

Your Health Should Not Depend on One Practitioner

A skilled practitioner can literally be lifesaving. They can guide, support, educate, advocate and help you make sense of complex symptoms. But no practitioner should hold so much power that your entire sense of safety, progress or direction depends on their ongoing availability.

In my book, Aligned for Healing, I wrote about how I now see practitioners as partners in the process of restoring health but not as substitutes for my own actions. What I meant by this is that you cannot give away your autonomy. You can receive help and often you need help, but you cannot hand over your entire health journey to another person.

People change. Access changes. Skills change. Sometimes the practitioner who was right for one season is not the practitioner you need for the next.

No practitioner will know everything. In complex chronic illness, good care requires a team. The best practitioners understand this. They work within their scope and when something sits outside that scope, they help you find the next appropriate layer of support.

The key is not to do everything alone. But prioritise building a team and a framework that supports your capacity, rather than placing all your hope in one person.

The beautiful thing is that you do get to choose who speaks into your health journey. In Australia, we often have more choice than people realise when it comes to selecting practitioners and seeking another opinion. This is not the case in every healthcare system.

When I worked in New Zealand, I was surprised by how different this could feel. In the practice I worked in, patients were generally allocated to a GP and there were more limited options to see someone outside that structure. In Australia, there is often more flexibility and now with the use of telehealth, it is increasingly possible to access support from practitioners across the country.

So, if this is the season you find yourself in, where you are trying to work out who may be the right person to support you next, you are not alone.

It can take time to find the right practitioners. It can take time to rebuild trust, especially if you have felt unsettled by a sudden change in care. But the loss of one practitioner does not mean the end of your progress.

Sometimes it simply means pausing, reflecting on what you have learned and asking what support do I need for this next season?

There are practitioners who can help. There are people who will listen, collaborate and support you as you continue to build stability and capacity over time. Hold onto hope as you look for them.