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Communicating your IBD
What to think about when communicating your IBD
Top tips
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There is no such thing as a 'normal' conversation: each person
is unique, and has to be treated as such.
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As an individual with IBD, you need to be very aware about the
level of intrusion/disclosure there may be in any given
conversation. How much trust and confidence do you have in the
person you are talking to?
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The
(ideal) aim of any conversation is to have the listener
understand your IBD, accept and support you with no judgement.
(This is a difficult objective to achieve for any conversation,
so do not aim too high - keep trying!).
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A principle of 'give and take' is important - both yourself, and
whoever you are talking with will need to respect each others'
boundaries. The person should be respectful of your motivation
for talking to them about IBD, and you should be respectful of
their curiosity and learning process.
General considerations
As
the person with IBD, you will have a unique set of communication
needs depending on who you are, your age, your personal
circumstances, the stage of your disease, the severity of your
disease etc. Do you have a job? Do you have the support of a family
to fall back on? Do you have a close friend? How many people know
about your illness? In short, as you are an individual, a unique
person, you will need to think about how to personalise your own
approach to talking about your IBD to different audiences. In other
words, only you will be able to judge what you need to say about
your IBD, and to whom you need to say it.
However, while your communications will be based upon you as the
individual with IBD, you will have a number of communication issues
in common with other people with IBD irrespective of your age,
severity of disease, etc. For example, you will probably need to
think about how to communicate about the following:
This means that, when you communicate with others, you will need to
consider different approaches for different people, depending upon
your relationship with them. Only you can identify what these
specific approaches are, based on any particular situation.
Remember, you own all the information about yourself - what you
decide to disclose is your decision.
As
a general guide, you need to be aware of:
Different people have different comfort levels - there is no 'one
size fits all'. Each person with IBD has to learn what they are
comfortable talking about, and what the person they are talking to
is comfortable with listening to.
General ignorance about IBD
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If
you are lucky, some people you speak with may have heard about IBD,
and some may know the challenges you face. Others will know very
little, while others may have heard about the 'bowel' aspects, and
maybe flares.
You know that IBD is much more than that, but that is your
communication challenge! You also have to think about how to
communicate the wider issues that accompany your IBD, rather than
just the 'bowel' issues. Your audience may not be aware of your IBD
or have been involved previously with a person who has IBD and
therefore may have a low level of knowledge that could be
frustrating. Topics which are of significance to you might not even
appear on their 'radar'!
So,
you will need to decide how best to tell them about a number of
topics, such as:
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any alterations you have to your body image (for example, if you
have a stoma)
-
the significant weight loss due to disease/surgery (it is not
anorexia nervosa)
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the side-effects of steroids (for example "moon" face)
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the mood swings
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the fatigue
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admissions to hospital
Once you start a conversation, understanding and accepting that you
will most probably (regularly) need to explain things that
exasperate you (e.g. that IBD is not having 'irritable bowels') may
help you feel less frustrated. As you explain things, and people
understand more, they will ask fewer questions that you might find
silly, irrelevant or rude. But that is what the communication is for
- to educate your listener, so they can become more understanding
and supportive of you.
Similarly, the 'smaller' topics (stomach cramps, constipation,
diarrhoea, tiredness) may seem unimportant in themselves to your
audience (after all some may think "we've all had a bit of
constipation or diarrhoea haven't we - so what's the problem?"). But
you will have to think about how you can get across that a
mixture/combination of these symptoms, as well as their severity,
together with the other emotional aspects of IBD, can sometimes have
a major impact on your quality-of-life, and your ability to
participate in day-to-day activities.
These issues will cause frustration from your side. But,
communicating about the impact these items have on your day-to-day
existence can only help your audience gain a better understanding of
the challenges you face. Do not shy away from these - to many
audiences they are not even things they would associate with IBD.
Also, remember, that (unfortunately) some illnesses are generally
deemed more 'socially acceptable' (broken arm, sports injury) than
others (depression, bulimia). So, discussions concerning bowels,
faeces, toilets, etc. may be more difficult for some people to
have/accept than others. This has to be taken into consideration
during any conversation.
IBD
is sometimes called an 'unseen illness', because it is not outwardly
obvious to other people. Flares don't show like a plaster cast does
- and symptoms (tiredness, short-temper) may be mistaken for
moodiness or bad temper and misinterpreted as such (especially among
teenagers). So, communications to pre-empt/manage such situations
will be necessary.
Communicating clearly about your needs
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What
does this mean?
To
give an example, living with IBD sometimes means having to
prioritise your health over other activities. This means that there
might be times where you will have to communicate with
family/friends/peers/partners/work colleagues about not being able
to participate in previously agreed tasks or activities, for
example. This can be difficult. However, it is important to be
assertive and clear so that the person you are communicating with
knows a little about the situation, your reasons, and that it is not
appropriate to coax or cajole you into changing your mind.
Consider the following statements:
(a)
"I'm not sure whether I can go out tonight.
It's just that I'm not feeling well, would you mind if I didn't go?"
(b) "Something has come up, I am not
feeling well and I need to stay at home this evening. I'm
disappointed, but have a good time without me".
(c)
"I just can't go. You never understand, just
leave me alone!"
You
can see that the statements are different. The first statement is a
little vague and passive, and would probably lead to someone trying
to convince you to still go out, which is not what you need. The
second is more assertive and clearly states what is needed. The
third is more aggressive and probably won't win you many friends!
Try to
remember to aim to be
assertive
(definition:
someone who behaves confidently and
is not frightened to say what they want or believe) -
not
passive
(definition:
someone who accepts or allows what
happens or what others do, without active response or resistance)
and not
aggressive
(definition:
someone who is unduly forceful or
belligerent). This is a hard thing to do especially when
you are not feeling well, and already feeling bad that you have to
back out of agreed plans. Practicing possible statements can be
useful. Also, think of times when you have successfully and
unsuccessfully communicated your needs to others, and try to
remember why it worked or did not work out so well.
A
person who is newly diagnosed with IBD may have more difficulties in
communicating/talking about various topics, compared with someone
who is more experienced with their illness. You should not be afraid
of acknowledging that it is difficult to talk about some aspects of
your disease, and it may be difficult to talk to some people about
certain aspects at all. Do your best to accept this. Have the
confidence to be able to choose what you want to say, and when you
want to say it, and to whom.
Remember though, that out of all your contacts, you need to be
confident in your ability to talk to your healthcare practitioner -
they will be very aware of the potential embarrassment levels of a
person with IBD, especially with members of the opposite sex. They
are trained to put you at your ease, so try to gain the confidence
to be open and honest with them during your
consultations.
Despite this, it can still be difficult (awkward even) at first with
health professionals - nothing is perfect; however, their role, is
to gain your trust and confidence and be able to talk with you about
your IBD, so over time this awkwardness should not be such a big
issue. It may help to remember that IBD specialists see people with
IBD every day, and so will already be experienced with the difficult
or embarrassing aspects of IBD.
How to raise a difficult subject
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Some
topics of conversation are difficult to talk about, and
uncomfortable to introduce into a conversation. Waiting for the
right time to say something can be challenging, as there may never
be a 'right time'. One useful strategy is to proactively make
time with someone to discuss an important topic.
For
example:
"There
is something that I wish to discuss with you. I wonder if we can do
this over dinner tonight."
That opens the conversation and gives you time to build confidence
about what to say.
Another strategy is to highlight that you are about to say something
that is difficult. For example:
"I need to tell you something that
is very difficult for me to talk about/difficult to say."
You
will find that the person listening will stop what they are doing
and listen to you, which can make it easier (or sometimes harder) to
continue. But you are helping them understand that you are going to
say something important, which will facilitate good communication.
You
might also want to make the situation easier for you both by telling
them what you would prefer them to do. For example:
"I
want to tell you something really important, and I want you to
listen to everything I say before you respond, to make sure that I
cover everything first".
Some
people find it easier to talk about important issues when they are
engaged in another activity, such as when they are driving, cooking,
playing golf, etc. This can be helpful if you find you don't like
the intensity of a serious discussion, but be aware of the place
that you select to ensure that you have privacy or that it is
appropriate (i.e. it will be difficult to drive if you get very
upset).
Who
should you talk to?
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There are some people with whom it is strongly advisable for you to
have a conversation with about your illness. However, this means
that you have to think about the unique challenges you will face
communicating to each of these groups of individuals. This is
important, as these people will become your support network.
However, your conversation with each one of these people will be
different.
For
example:
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your employer
may need to be aware of your illness (e.g. when in remission,
you can work OK, but if you need to regularly take time off for
treatment, or you cannot work because of flares etc.) in order
to offer you a sympathetic and supportive work environment.
Think about any advantages or disadvantages of telling your
employer - you might wish to seek advice about 'working with IBD'
first.
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