Communicating your IBD
What is a support network?
support network is a matrix, an interconnection of people centred on
you, who are there to support you through life's up and downs. This
is something everyone needs - not just someone with IBD. We all have
people who are there for us, and who we are there for when they need
support. However, as a person with IBD, because of the challenges
IBD presents you with, it is important that you identify and build a
strong support network, so that you do not need to face these
Your support network doesn't have to just include your partner,
or your family. Friends, and/or your employer, can also be
Look out for any public information meetings, or support group
meetings. If you feel comfortable in attending, encourage your
friend/partner to accompany you and learn more about IBD and
talk to other members.
Your support network will be unique to you, but it is very
likely that the core to it will be
A family member
Your spouse or partner
A close friend
You need someone who you can emotionally open up to, someone who
you do not need to cover up with, someone with whom you can
'just let it all go'.
Communication with your support network is essential, otherwise
you will feel isolated. Your communication with different
members of your support group will depend upon the variables in
the Communication Pyramid (trust, disclosure, vocabulary, and
back to top
all differ in our level of personal boundaries. Some people like to
share everything with the world; others are more private and only
like to share things with those closest to them. People are
different - so you will need to work within your own personal
boundaries when you communicate about your IBD, but you will also
need to consider the personal boundaries of your audience.
IBD is associated with physical, sexual, emotional and personal
issues, disclosure of which is associated with varying degrees
of intimacy, trust, and confidence in the person to whom these
details are being disclosed.
There are degrees of disclosure regarding things which are
private/personal which need to be evaluated before any
Therefore, because these boundaries are 'personal' this module
cannot give you specific advice on which words to say - just a
framework to work in.
Be comfortable with your approach.
How much, or how little you want to say about your IBD, is up to
The conversations and comfort levels will be different in
different situations (e.g. employer versus healthcare
However, it is better to have someone (doctor, nurse) who you
can open up with unreservedly.
Your personal boundaries will reflect your personality - some
people are open, some are private - neither is better than the
There can be issues when the person with IBD bottles up their
IBD can sometimes be physically isolating (with topics which can
be thought of as socially taboo).
Everyone needs support.
All the research suggests that individuals with support networks
do better than those without.
So you do need to try and build up such resources, and have
other people to rely on.
Again, this is an individual choice: some people need lots of
people in their support network, some only need a few close
back to top
might help to have a picture an 'Ideal' Supporter, someone who
unequivocally, intuitively and naturally just does the right thing
While nobody is perfect, having an image of what you would (ideally)
envisage as the best possible support for you might help you in your
communications with different people. This ideal is something you
can aim for when you talk to others.
fact, the different types of 'ideal' supporting behaviours are
likely to spread across a number of your contacts in your network,
not concentrated into one person. In addition, while these ideals
are a 'nice-to-have', you cannot demand them, nor can you expect
them. Most of the people you know will not offer you all of these,
but unless you have this picture of what you would like from them,
how can you influence them to give you such support?
However, that's really what your communication is about - aiming to
gain the best level of support you can from your family, friends,
teachers/tutors, healthcare practitioner.
This might be difficult to imagine, so here are some thoughts about
what an Ideal Supporter might behave like. Some of these behaviours
might work for you, others may not - but working through this
process might help you see in your mind what you actually want from
You are my supporter - this is how you can help me. This is what I
need from you. This is how you should act, what you need to know. I
value your support it helps to make me feel better.
Does not make me feel isolated because I have IBD
Does not make me feel ‘poor me’
Gives me understanding, not sympathy
Knows they cannot ‘mend’ me
Knows they cannot catch IBD (or my symptoms)
Allows me to be well, when I am well
Allows me to be ill, when I am ill
Laughs about my illness and cries about my illness – but always with
Lets me go out; lets me stay in; respects my decision to go out/to
Respects my control over my medicine
Lets me have ownership of my health
Does not judge me by my symptoms (or IBD)
Realises I am not defined by IBD
Realises I am who I am; I am not my illness
Realises that this is my life – I am normal, allow me to live a
Helps me work out the best way for me.