Communicating your IBD
Before you communicate about your disease with anyone, work out
(plan ahead, visualise) what you want the outcome of that
conversation to be. That outcome will be different for different
people. Here are some scenarios for you to practice with:
Visualise them going well – what did you say and do?
Visualise them having gone badly for you
What went wrong?
What would you do differently next time?
Spectrum of trust
is a very complex, dynamic thing – something which takes time to
build and be comfortable with. It requires confidence in you,
yourself and in other people. Similarly trusting your tutor, or your
employer, about an aspect of your illness may be different to your
trust in your partner, or your doctor.
you communicate about your disease with anyone, work out (plan
ahead, visualise) what you want the outcome of that conversation to
be. That outcome will be different for different people:
Think about your partner, friends, colleagues, employer, etc.
If you tell them something, do you trust them?
What do you want to say to them?
Imagine wanting to tell them something – a close, intimate piece
of information? Could you? Place them on the rainbow above,
depending on how much trust you have in them with that piece of
Now think about another piece of information, maybe not so
private? Where would they sit on the trust line now?
How much do you trust them today? How open do you feel? Was it
the same as last year? How will it be in 6 months time?
this really means is that (for example) you may want to share things
with your friends which you may not want to share in the same way
with your family. Similarly telling your tutor, or your employer,
about an aspect of your illness may be different to how you tell
your partner, or your doctor.
Think about your partner, friends, colleagues, employer, tutor,
What do you want to say to them? How much of yourself are you
sharing with them by telling them this information?
Think about your IBD in general. Place one of your contacts on
the chart above, their position being dependent on how much
disclosure you feel happy sharing with them about your IBD.
What about incontinence? Where do they sit on the chart now?
Would they sit in the same place if you were discussing fatigue?
How comfortable are you with them today? How open do you feel?
Was it the same as last year? How will it be in 6 months time?
What about another contact; do they sit differently on the
is a similar exercise to the disclosure one, but is about topics,
rather than contacts. There are things we like to keep private,
while there are things which we don’t mind people knowing about.
These topics will be very personal to us, and so what we want to
keep secret, and what we want to share with others, will depend on
our personality. Some people are just more private than others.
It is not wrong to be private, just as it is not wrong to tell
people things. It’s who you are. What you think you should keep
private about your IBD, and what you are happy to talk about, will
depend on you, the person you are talking to, and the topic.
Have a think about a certain topic – for example, fatigue. How
private or public is that for you? So, put it in one of the
What about incontinence? Put it in a box.
Think of other topics around your IBD. Where would you put them?
Now, look into the box. Would any of the topics move across the
boxes if you were talking to your healthcare practitioner? What
about your mother or father?
this really means is that nothing is fixed. Topics which can be
private, embarrassing and upsetting at one stage of your disease can
become easier to talk about and less distressing at a different
stage, or with different people.
Vocabulary matrix visualization
To view and print a larger version of this table,
When you talk to people about your illness, what words do you
Look at the vocabulary matrix. What words would you use for the
different people you are talking to?
Click on the
Glossary: see what other words
you could add to the left hand column, and what words you would
use to talk to you partner, your mother/father, or your employer
Many people get embarrassed over ‘toilet’ words (faeces, poo,
stool, etc). Be aware that most people have a set vocabulary
that they have used since childhood, and which will be defined
by their age, social background, education and personal
All this means is that your vocabulary will change depending
on who you talk to. You need to be comfortable with the words you
use, but the words you choose must not make the person you are
talking to uncomfortable – otherwise you will not communicate