Communicating with healthcare professionals: how to make yourself heard

Have you ever been told your symptoms are “just stress”?

Yet you're struggling with pain or other symptoms, knowing your body is telling you something isn't right, but you don't feel like you're being heard.

I've sat on both sides of these conversations. I'm a Dietitian, but I'm also someone living with Crohn's Disease.

I know how difficult it can be to explain what is happening to your body when you're already exhausted, worried and unwell.

So, how can you make the most of conversations with your healthcare professionals and make sure they understand what you're experiencing?

How do I get healthcare professionals to hear me?

1. Explain how your symptoms are affecting your day-to-day life.

Rather than only describing the symptom, explain what it is stopping you from doing.

Are you struggling to work?

Are you cancelling plans?

Are you avoiding eating before leaving the house?

Are you waking during the night because of symptoms?

This helps your healthcare professional understand how significant the symptoms are for you.

2. Keep a detailed record of your symptoms.

Write down dates, times and anything else you feel might be relevant. It doesn't matter if something feels small. Sometimes these details can help build a fuller picture of what is happening.

Take this with you to your appointment.

3. Be clear about what has changed from your normal.

This is particularly important if you live with a chronic condition.

For example, if you have Inflammatory Bowel Disease and experience some gut symptoms even at your baseline, explain what is different now.

What has changed?

How often is it happening?

How long has it been happening?

How is it different from what is normal for you?

4. Tell them what you're concerned about.

If you think something specific might be happening, it's OK to say so and ask for their opinion.

You could ask:

"I'm worried this could be related to X. Do you think that's possible? If not, can you explain why?"

You don't need to diagnose yourself. But you can explain what you're worried about and ask questions.

How do I prepare before an appointment? 

To make the most of your time, before your appointment decide what you need from it.

Before you go, write down the two or three most important things you want to ask.

For example:

"My symptoms have changed significantly over the last month. I'd like to understand what could be causing this and whether I need further investigation."

Having this written down can help you stay focused, particularly if you're anxious or have had difficult healthcare conversations in the past.

Make sure you know what happens next

Before you leave the appointment, ask clearly what the plan is if your symptoms continue.

For example:

"If my symptoms don't improve in two weeks weeks, what are the next steps?"

You might also want to ask:

• Who should I contact if things get worse? (if you don’t already have contact details for your IBD Nurse/Team)

• How long should I wait before getting back in touch?

• Are there symptoms that mean I should seek help sooner?

• Will there be a follow-up appointment or further tests?

The aim is for you to leave knowing what happens next, rather than going home and wondering what you're supposed to do.

Should I go to appointments alone?

If you can, consider taking someone who knows what you've been going through, particularly if you've had difficult healthcare conversations in the past.

It can be hard to absorb everything you're being told during an appointment. You might be concentrating on one piece of information and completely miss another.

A friend, partner or family member can listen, take notes and sometimes remember questions that you don't think of at the time.

What should I do if I feel my symptoms are being dismissed?

Being told stress could be contributing to your symptoms can be difficult, particularly when you're experiencing very real physical symptoms. Don't let the conversation end at “stress”.

Although stress can contribute to physical symptoms, that doesn't mean the symptoms aren't real or that other causes shouldn't be considered where appropriate.

You could:

1. Ask what other causes might be causing the symptoms
2. Ask them to explain why further investigation is not needed at the moment
3. What would need to change in order for the symptoms to be investigated.

If you're still concerned, particularly if your symptoms are continuing or worsening despite the current plan, you can ask about getting another opinion.

What do I do between appointments if getting an appointment takes so long?

If your symptoms suddenly become significantly worse, you develop new or concerning symptoms, or you feel seriously unwell, seek appropriate medical advice rather than waiting for your next routine appointment.

If you have IBD, make sure you know who to contact if you think you're experiencing a flare and when you should seek more urgent help. 

Remember, you know what is normal for your body

You might not know what is causing your symptoms. And you don't need to walk into an appointment knowing the answer. But you know what is normal for your body.

Being able to clearly explain what has changed, how long it has been happening and how it is affecting your everyday life can help your healthcare professional see the fuller picture.

Living with a sudden change in your health or managing a chronic illness is hard enough without feeling like you have to fight to be heard.

The aim is to work with your healthcare professional to make a plan. This starts with having  clearer conversation, asking the questions that matter and leaving knowing what happens next.

If you're living with IBD and struggling to make sense of your gut symptoms, food or what your body is telling you, you don't have to keep guessing. 

Use this guide and if you need help with you diet, book in a free call.