You Can Choose Who Speaks Into Your Health

Choosing Practitioners When You Live With Chronic Invisible Illness

In my last blog, I wrote about what can happen when a trusted practitioner suddenly becomes unavailable. For many people living with chronic invisible illness, this can feel unsettling, especially when that practitioner has been one of the few people who helped you feel heard, understood and supported.

This week, I’ve been thinking about the next part of that conversation.

How do you decide who should be part of your care team?

This can feel complicated when you are unwell, especially when managing fatigue, brain fog, fluctuating symptoms or a condition that is not always well understood.

Over the past few weeks, patients have shared some of their experiences navigating practitioner relationships. Some have described appointments where they initially felt unheard or uncertain, only to find that the next interaction was more engaged, collaborative and helpful. Others have described feeling anxious about working with certain practitioners, especially when they did not feel free to discuss aspects of their care openly. Some have felt disappointed when a practitioner was not able to help in the way they had hoped.

As I’ve been reflecting on this, it raises two important questions. When is it time to find another practitioner? And, how do you choose who has influence in your health care?

Not Every Difficult Appointment Means You Need to Leave

This is where wisdom and discernment matter.

This does not mean expecting perfection from your practitioner. It does not mean leaving a practitioner after one difficult appointment. It does mean paying attention to whether the relationship is helping you build capacity, clarity and confidence in restoring your health over time.

Practitioners are human too.

Just as you may have days where your brain fog is worse, symptoms flare or words are harder to find, practitioners also have days where they are tired, distracted, under pressure or carrying things that are not visible in the room.

This does not excuse poor care.

Sometimes one difficult appointment may be an outlier. Sometimes it is worth allowing space for another interaction, especially if the behaviour is unusual for that practitioner and the relationship has otherwise been safe and helpful.

I have seen this happen. Sometimes you may leave one appointment feeling unsure, unheard or uncertain about whether the practitioner really understood what was happening. Then, at the next appointment, the interaction feels different. The practitioner is more thoughtful, collaborative and engaged.

That is why discernment matters. The goal is not to react quickly to every difficult moment but to notice patterns over time.

When a Pattern Starts to Matter

There is an important difference between a disappointing appointment and an ongoing pattern that leaves you feeling less safe, less clear or less able to participate in your own care.

It may be worth pausing to reflect if you repeatedly leave certain appointments feeling belittled, threatened, panicked or deeply anxious. If you feel unable to ask questions, seek a second opinion or participate in decisions about your own care, it’s important to notice.

A skilled practitioner will not always agree with you. They may not recommend every treatment, referral or investigation you ask about. They may have good reasons for that. Disagreement should still be communicated with respect, kindness and clarity.

In a supportive practitioner relationship, there is usually space for questions, respectful discussion and acknowledgement of when additional support may be needed.

Sometimes changing practitioners is not simple. You may have limited options or be waiting for specialist care. You may be seeing someone who provides access to a treatment, service or expertise that is difficult to find elsewhere.

In those situations, it may mean preparing carefully before appointments and deciding which issues are most important to raise. It can also be beneficial to bring a support person or seek another opinion where that is possible.

The priority is not to make a rash decision or keep changing practitioners in a way that fragments your care. Instead notice what is happening and review whether this relationship is helping you move towards your health goals.

The Right Support Can Build Clarity

The right practitioners can make a meaningful difference, not because they hold all the answers, but because they can provide clarity and direction for your next step.

When you are living with chronic invisible illness, it can be tempting to seek input from multiple practitioners at once, especially when you are desperate for answers. But more input is not always better. Even well-meaning advice can become overwhelming when it piles up.

Sometimes the most helpful thing is to pause and ask:

What matters most to me right now?

What kind of support do I need in this season?

Your own sense of what feels supportive matters. Community recommendations can be helpful. Practitioner recommendations can be helpful. But these recommendations are most helpful when they align with your goals, instincts and priorities.

A supportive practitioner is often someone who listens carefully, communicates respectfully and explains their reasoning in a way you can understand.

They can be collaborative without needing to agree with everything. They are willing to discuss options, acknowledge uncertainty and recognise the limits of their own expertise. They support your autonomy rather than replacing it.

A good care team is a two-way relationship. It helpful to your practitioner, when you can articulate what your health goals are at the time. This does not mean you need to have everything perfectly organised. If brain fog makes it hard to explain what is happening, writing down a few thoughts before an appointment can be helpful.

You do not need to have it all figured out. Sometimes it is enough to stay connected to your own needs and bring those needs into the conversation.

Your Care Should Build Capacity, Not Dependence

Your health care should not be built on fear. It should not require you to abandon your own discernment. It should not depend on one person holding all the answers.

Sometimes that means continuing with a practitioner and extending grace after a difficult interaction. Sometimes it means seeking another opinion. Sometimes it means recognising that a practitioner was helpful for one season but may not be the right fit for the next season.

Practitioners can guide, support, educate and advocate. They can help you make sense of complex symptoms and work out the next step. Your care should not be dependent on one person.

As you reflect on your current care team, ask:

Who is currently part of my healthcare team, and who do I need to continue seeing in this next season?

Are there practitioners that I need to delay or stop seeing?

Who can help me find the right support?

These questions will help you begin to choose your care team with greater intentionality. Your needs may change over time and your care team can change with them. What matters is choosing support that helps you move forward with clarity and confidence.