Communicating your IBD
The Communication Pyramid
With any illness, and especially with IBD, there are a number of
communication challenges, especially around intimate and/or
However, you need to have the confidence to communicate to some
people, some of the time, about these topics.
Other topics may be easy for you – but will no doubt be harder
for other individuals.
Before you are able to successfully communicate with anyone
about your IBD, you will need to trust them.
Depending on that trust, you will feel you are able to say
(disclose) certain things to certain people, while you will feel
uncomfortable telling other people the same information.
Once you have decided to communicate with someone, you need the
right words. The vocabulary you use will depend on you, on them,
and on what you want to say.
As you are an individual there will be a personal element to
your communications which only you will know.
Remember, you are in control of what you say, to whom, and when.
Figure 1. The Communication Pyramid
Level 1. Trusting
should envisage your communications as a pyramid (see Figure 1) with
trust the bedrock upon which everything else is built. Without
trust (definition: to have belief or confidence in the
honesty, goodness, skill or safety of a person, organisation or
thing) it will be difficult to communicate effectively about IBD.
You may trust some people implicitly, others may take longer to gain
your trust, but without that trust, you would be unwise to disclose
anything about yourself or your IBD.
Level 2. Disclosing
Once you feel you have a level of trust in someone (such that you
want to disclose information about yourself to them), you have to
make your mind up how much you actually want to tell them about your
IBD. Such controlled disclosure just means that you are judging the
sort of relationship you have with them, before you tell them
Level 3. Considering what to say
Once you have decided to share information about your IBD, you need
to work out what you want to say, to whom and when. For example, you
may have an urgent need to tell one particular person all about your
IBD, the challenges you face, the concerns you have, the support you
require. With another person, you might only want to tell them a
little bit about one particular topic, or a couple of topics,
meaning that you do not want to disclose as much to them as you were
willing to do to the first person. Alternatively, with another
individual, you may want to tell them something, but choose to wait
a little while (for example, after you have seen your doctor, or
spoken to another of your contacts). In this way you are also
deciding when the best time to give out some information might be.
Level 4. Vocalising
you need to consider how you want to/should say things. This is
where the correct vocabulary comes in; the words you use might be
different for one person compared with another. This does not just
apply to IBD it happens in many other situations. A physician will
use certain words with other doctors, while using more common words
with a patient (for example, a physician may describe a subcutaneous
haematoma to a colleague, but describe it as a bruise to a patient).
Similarly a car mechanic will use different words to a customer than
he/she would to another mechanic, while a solicitor talking to
another solicitor will converse differently than with a client.
Thus, you need to consider what vocabulary to use; this will very
much depend on the context in which you are having the conversation,
the audience’s knowledge, and how comfortable they are in hearing
what you want to tell them. Be aware that certain words will mean
different things to different people (‘cold’ can mean the ‘flu, or
just under the weather, or just not very warm; ‘quite sick’ may mean
poorly, or vomiting, or generally very ill. What does ‘tired’ mean
to you? Is it extreme fatigue, or is it needing a cat-nap or sit
down?). So, you need to choose your words carefully, to avoid
Also, be aware that some people are very embarrassed about hearing
or using ‘toilet-type’ words. In most people this goes right back to
their childhood, and toilet-training. Comfort words and family words
might be appropriate to use with your own family, but may not mean
anything to someone outside this circle; for example, using words
like ‘faeces’ or ‘bowel movement’ may be lost on a child, or indeed
some adults. We all know ‘street’ words, or ‘rude’ words to describe
stools for example, but they may not be appropriate in the
conversation you are having with friends or family members, as they
may offend or distract the listener from what you are trying to say.
So vocabulary is important! Your audience needs to understand what
you are trying to say, and the words you choose will be important in
getting your communication messages across.
Level 5. Individualising
top of the complexities of any particular situation in which you
find yourself when talking to someone, and the challenges you face
in making yourself clear, each conversation you have involves you as
an individual. You have certain personal requirements, and certain
individual priorities, which make each conversation unique. This is
where the individualisation of your conversation will occur. Your
themes, topics, facts, thoughts, concerns and ideas might be the
same as have taken place in previous conversations. Indeed these may
be similar to the themes, topics, facts etc. that a number of people
have. However, it is the individual that you are, and the individual
circumstances under which you are having the conversation, which
will mean these topics are vocalised in a unique style, and in a
unique way. This is something that only you can decide on, and is
something you must be comfortable with.