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Preparing for appointments and speaking up for yourself.

Good communication can make an important difference in expressing how your condition is affecting your life, and making sure people understand what matters to you.

Your appointment

This might be by telephone or face to face in a clinic. The consultation is likely to cover:

  • any background that is relevant to what’s happening now
  • what is happening now, including results of recent investigations, effects of recent treatment
  • a plan for the future, both the immediate and possibly longer term

It’s important that there is an opportunity to provide information that is important to you. Please ask to do so, for example by asking, Can I add something?”

Appointments journal

Crohn’s & Colitis UK has an appointments journal to help you get ready. Download the appointments journal.

It has some useful tools to help you talk about how you are feeling, how to make the most out of your time with health professionals and focus on what matters to you. It includes tips on talking, handy questions and provides a space where you can make notes.

It also includes some tools for communicating your symptoms, a useful gut diagram and an appointment guide that might help you to think about some other symptoms that you might have. It provides examples of how you might want to describe your pain, fatigue, bowel problems and poo, along with some great attention-grabbing phrases that encourage you to use emotional language to say how bad things are for you.

The journal provides a space for you to make notes of how you’re feeling in between appointments and keep everything neatly in one place.

Preparing for appointments

Being adequately prepared for appointments or telephone calls is very important, especially if you don’t consider yourself a very confident communicator.

  • Make notes beforehand to help you clearly communicate what you want to say. It can help to reduce anxiety and help prompt you to ask difficult questions.
  • Aim to keep things as simple as possible and remember to focus on what’s most important for you to get out of this appointment.
  • Practise what you are going to say in the appointment and make sure that you haveall of the relevant information to hand.

It’s really important to make sure your message is heard, but sometimes what we are trying to say is not what the other person hears. This can cause frustrations and misunderstandings.

An example page from the appointments journal

It may sound obvious, but listening is the one communication skill that it can be useful to perfect. Being able to accurately receive and interpret messages is vital for good communication.

Your appointment is about you, so don’t leave feeling confused or unsure.

  • If you don’t understand fully what your healthcare professional has said, ask them to explain it again.
  • We know your appointment time is limited but try not to feel rushed.
  • If you are finding it difficult to follow the conversation, ask for the information or advice to be repeated or told to you in a different way.
  • You are likely to hear and read many new medical terms when you are diagnosed with Crohn’s or Colitis. An a - Z of terms, which lists many of the words you might come across when talking about IBD, can be found on the Crohn’s & Colitis UK website: A- Z of terms
  • Their appointment journal has a list of Things your healthcare professional may say.’ If you’re not familiar with the terms being used, ask for them to be explained.
  • If you are in a face-to-face meeting or on a video call and don’t understand what you are being told, you could ask the healthcare professional to draw or mark up on a graphic of the gut to give you a visual aid.
  • It’s OK if there are times in the conversations when no-one is talking. This may give everyone chance to process what has been said. You should not be afraid to ask for time to think if you need it.
  • It can be useful to repeat back what you’ve been told, just to check that you’ve understood the conversation.

Support in appointments

Remember, you can always take someone to your appointment with you to help you. It is also perfectly acceptable to make your own notes during an appointment.

If you need support in the form of a translator, or any other form of support to help get your voice heard or for you to be able to understand what is being said to you, please let your IBD team know.

If you need a British Sign Language (BSL) interpreter this can be arranged. You can request a particular interpreter, if it helps, although we can’t guarantee that. This is arranged by the clinic booking team. When the IBD consultant, nurse specialist or the staff member requests your appointment, please make sure they also request a BSL interpreter with your preferred interpreter details, if necessary. Your clinic appointment confirmation letter will state that a BSL interpreter has been booked. If a BSL interpreter is required for other situations, for example for a planned telephone clinic or procedure, please discuss with the person that arranges the appointment.

Occasionally a BSL interpreter may cancel at short notice. Someone from the IBD Team will be in touch to rearrange your appointment as soon as possible.

Describing your symptoms

How are you feeling?

It can feel awkward and embarrassing to tell your IBD team how you feel, but they really need to know in order to support you well. Don’t ever feel that what you are experiencing is not relevant. Tell them about any important aspects of your life, especially if this is something they might not be aware of, such as your sexuality and gender identity, and different life stages like pregnancy and menopause.

Although you are talking to professionals, you don’t need to worry about using the proper medical terms. It’s fine to use everyday language to talk about your experiences. That way you will feel more comfortable.

When it comes to describing your symptoms, there’s no right or wrong way to say how you feel. It can feel strange to use emotional language, particularly if you have not done this before, but don’t be afraid to say how bad things are for you. Here are some examples of how you might start to describe how you feel:

I’m worried about…

I can’t…

I’m struggling to…

I’m not coping with…

My quality of life has got worse

I’m not happy with how my treatment is going

Remember: it’s your body and you are the expert in how you feel.

Do not be afraid to ask for time to think if you need it, and repeat back what you have been told just to check that you’ve understood it.

It is OK to say no, or disagree, and to question anything that is said to you.

If you are not happy with your treatment talk to your IBD team. If you want to speak to someone outside the IBD team, you can talk to PALS.

Examples of symptoms

The diagram below shows some examples of symptoms that could be related to your IBD. You might want to ask about these. View the full diagram of symptoms.

You don’t need to wait for your next appointment to raise a question about a new symptom. 

If you’re receiving care from the Sheffield IBD team, call 0114 2712209. If you’re receiving care somewhere else, please contact your own team.

Guide to pain scales

Using scales like these can make it easier to communicate how you are feeling. View the full pain and fatigue scale.

Other communication tips

We also express ourselves through our own body language, posture and eye movement. For instance, in a face-to-face meeting, it can be useful to try to maintain direct eye contact if this is comfortable for you, to show interest and engagement in the conversation.

It’s normal to feel stressed or overwhelmed at an appointment. If this happens, you’re more likely to misread what you are being told, or to send confusing nonverbal signals.

  • take your time
  • try to relax as much as you can
  • close your eyes briefly and take some deep breaths
  • keep your shoulders relaxed

Other useful tips can be to take something to hold in your hand, or, before the appointment, think about a particularly happy thought or memory you can recall if you are feeling stressed.

If you think you are likely to feel really nervous in your appointment, you might want to consider having someone with you. If you prepare beforehand, and practise together, they can help you remember all the areas which you want to discuss, and make sure you get any specific points across.

Make the most of the Crohn’s & Colitis UK appointment journal to help you prepare for your appointment. Use their handy tools to help you talk about how you are feeling.

What you want to say is important. Tell them about anything that matters to you.

Assertiveness skills

Assertiveness is about saying what you want, but in a way which also respects the rights and opinions of the other person. It is based on honest and direct communication.

You are the expert on your own life, so you should feel confident about what you are saying. It is important to realise that being assertive also includes being able to:

  • Say no or disagree
  • Ask for more time to think about your choices
  • Consider your options, but if you are not happy with them, to say so
  • Question anything that is said to you

Life’s challenges can be easier to deal with, and you may find it easier to tell people what you think you need, if you are feeling good about yourself, and know that you are good at things.

For example, sometimes people will compliment you and that makes you feel good and boosts your self-esteem. But you can also help increase your own confidence by believing in your own skills and abilities. A good tip is to think about the things you are good at and to recognise them - these can be from any area of your life. Focusing in this way can help give you have the confidence to say what you want in your appointments.

Trying to focus on positive statements can help. So for example, practice saying I can …” I will…” rather than I can’t” in your everyday life too.

If someone does not appear to be listening to what you are saying, or if you feel they are wrong, try to stay calm, assertive and confident. Repeat yourself clearly and
politely, say that you don’t agree with a particular point, and explain your reason.