Communicating your IBD
Communicating with different groups
What are the different groups with whom communication will take
place?
Spouse/partner
Family members
Friends
Employer
Work colleagues
Healthcare practitioner
Other people with IBD
Nosey, prying people
No one group has all the answers, they are all part of your support
network, even the nosey person!
Knowing how to walk away from someone, or walk away from a
conversation with someone you don't want to share it with can
give you strength, confidence, and a sense of perspective
What do I need to consider when talking to each of these groups?
The following section looks at each communication group in turn, and
suggests topics, ideas, concepts that you may want/need to address
with these groups. Nothing here is prescriptive; some of the topics
may apply to you more than others. Some may not apply to you at all,
while there will be issues that are not covered.
The aim here is not to tell you what to say - there may not even be
a need for you to say anything about some of the topics covered.
Rather this section aims to provide you with a framework in which to
consider your communications needs, and perhaps offer some guidance
in areas where others may have experienced difficulties.
Only you can decide what your individual elements are, but these
topic suggestions (and
the related exercises)
should help you gain the confidence to be able to communicate about
your IBD in the best way for you.
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Spouse/
Partner
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You may need to discuss:
Top tips
-
All couples can experience difficulties in communication at
various times - this is normal. -
IBD does not separate you from life's normal problems - it is
part of your normal life, and the challenges associated with it. -
Accept that you and your partner will have a number of issues
which you need to discuss; acknowledge them, but treat them for
what they are - things to manage, not to define you, or to rule
your relationship. -
Remember, you are a partnership first and foremost; IBD may add
a level of complication to your life, but so do many things!
Treat the IBD for what it is - something you can both manage,
together.
Emotional support
Your spouse or partner, by definition, will share your life, and
therefore your IBD with you. Of all the communication groups, your
partner will have the most cherished relationship with you. However,
communication with your partner presents a unique set of challenges
due to the complex, intimate nature of your relationship, never mind
the added complication of you trying to communicate your personal
perspective on your IBD to them.
They will need to know in more detail all the intimacies of having
IBD (e.g. what they should expect from IBD; what the symptoms are;
what can happen with a flare; what the side effects of therapy might
be) especially in the early days when you are coming to terms with
your disease, and until the appropriate therapeutic regimen is
identified.
This is because, as your partner, they will be significantly
involved in your life. They will be on life's journey with you. They
will need to understand that the disease will present you, and them,
with ups and downs. For example, you may need to share with your
partner details about what fistulising disease is (and what it
means) which you would not (necessarily) tell your mother, a friend,
or indeed a 'future partner' at the start of your relationship.
It may help your partner to understand the disease if they accompany
you to see your consultant or physician, and/or if they also meet
others with IBD, and their families. The ups and down of the disease
will add a layer of complexity to your relationship. You should both
accept that the disease will put strains on your relationship; it
will at times impact strongly upon your life, your partner's life,
and your lives together.
Managing fears and anxieties
There will be natural anxieties (fear of going out; embarrassment if
an accident happens) - but don't let this isolate you both. Discuss
options, and communicate your fears and anxieties, so you both have
a plan to deal with specific issues. Consider encouraging your
partner/spouse to learn about IBD - perhaps visit this website, or
use other written materials (which they can assimilate in their own
time and at their own speed). Alternatively, perhaps encouraging
them to speak openly about their fears might help them realise the
importance of providing you with the appropriate level of support
(both practical and emotional) especially during a flare.
Let's think about fears and anxieties from your partner's
perspective for a moment...
...they may want to protect you; mend or fix the illness for you;
make it 'go away'. Be the one you depend on; manage your life so you
are not in danger, in harm, in pain. You may want to become
dependent upon them, and so 'hide' from the problems your disease
brings. They may feel scared for you (and themselves), and so hide
their feelings, or envisage the worst possible scenario in any given
situation. On the other hand, your partner may want to deal with
your condition by ignoring it - i.e. not wanting to know anything
about the disease, and just wanting you to handle it alone. This is
sometimes how people deal with illnesses, and is perhaps based on
their own experience of managing poor health. Alternatively, you may
want to protect them by not being open, or apologising for being
ill, or feeling it is your fault you have brought this on you both,
or feeling guilty. These feelings can make you feel even more alone.
Try to listen to your partner's fears, and remember that other
people with IBD, and their partners, also experience these problems.
Sometimes, in people with newly diagnosed IBD, there is a feeling of
euphoria for the partner, as the symptoms at long last have a label
- now he/she can start getting better. But, when the person with IBD
doesn't improve as quickly as is 'expected', or the partner realises
that there is not a cure - just a continuous management of the
disease - other emotions can arise: blame, frustration, anger, guilt
and helplessness. In general then, a balance has to be struck
between the partner wanting to overprotect/ indulge/ protect you and
not giving enough support/understanding/consideration. Any
communication you have with them has to tackle this.
Difficult topics
Your illness may or may not affect your role in your relationship.
Who (now) is the main breadwinner? Who contributes what to the
household? Who is dependent upon whom? Are you a mother, a father, a
husband, a wife, a patient, or someone who is also dependent upon
your partner?
You may find it hard to initiate certain necessary conversations
about your IBD. How do you tell your partner some of the more
difficult aspects? The sooner you are able to have the confidence to
do this, the easier it is, because you have not had the opportunity
for certain negative behaviours to have become engrained (fixed).
Importantly, don't allow a distance in communication to build up
with you and your partner - that will lead to a feeling of, or
living in, isolation.
While a number of these issues and topics also apply to
communicating with other groups of people, the unique point about
communicating with your partner is important to the level of
intimacy involved, both sexual and non-sexual. It is something which
you (as a partnership) will need to assess for yourselves.
Be as honest as you can, as soon as you can. Be aware that it might
be difficult if your partner does not find out about details of your
illness from you, but via another route. If they do, how will this
affect the trust and openness between you? How will they feel if
they perceive you don't trust them, or are not able to confide in
them?
So, what do you say? This is very personal; you will have to make
the judgement yourself. But, some practical advice: initially, it
might be best to keep it factual, for example: "This is what my
disease is..."; "these are my symptoms..."; "this is
what happens when I have a flare..."; "this is what I have to
do if I have a stoma..."; "this is what I need to think about
if I travel...".
Let's look at some specific areas:
Toilet habits:
some people do not mind going to the toilet (both urinating and/or
defecating) in front of their partner. However, for other people, it
is a private matter, and even having a conversation 'through the
toilet door' is a big taboo! So, if you need to share the
practicalities of your toilet mechanics, which your IBD
necessitates, with your partner, you will need to judge on a
personal level what you actually want to share, depending not only
on what you need to tell them, but also on your partner's comfort
zone.
Sexual relations:
IBD can act as a wedge between partners, when it is difficult for
your partner to accept that, on occasion, your symptoms may make you
feel you don't want to engage in a physical sexual relationship. It
is not a rejection of them - you are unwell. The classic phrase "not
tonight darling, I have a headache" may sound silly; but the concept
captured by the phrase is not - i.e. that you have symptoms which
make you feel less than approachable. Tell them (gently) that sexual
relationships may be difficult at times, especially if IBD affects
intimate areas of your body. It does not mean you don't love them,
or that you don't want to be intimate with them, just that it might
not be appropriate at that moment in time.
Financial matters:
there will also be possible effects of IBD on your job, or on your
partner's job, and this may impact on your income (e.g. you may want
to change your job to suit your situation). You may be concerned
about getting a mortgage, or keeping up the repayments on a mortgage
you already have. Financial worries can add another level of strain
to relationships, not just to those living with IBD. Again, the
specifics of any communication have to be identified by you, but
don't allow any such concerns to isolate you. You may need to seek
advice from banks, financial advisors and social security
departments - but agree on any such approach with your partner.
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Family
members
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You
may need to discuss:
By
talking to them about the challenges you are facing, your family
will begin to understand why some days are better for you than
others. This will allow them to more easily adapt to your needs, in
order to give you the best support that they can. Talking to your
family is important for another reason. If you have no significant
partner, a close friend or someone else to talk to, the danger might
be that you start to bottle things up, running the risk of becoming
isolated within your own family.
As in all families, there are good times and there are bad times;
however, these will happen whether you have IBD or not. Over time
your family will become used to you and your symptoms. Time brings
normality. Just as your partner is with you for the long term in
supporting you, so is your family.
But remember, you relationship
is not simply with this thing we call 'a family'! Your family is a
group of individuals that might be made up of mother, father,
brother, sister, grandfather, grandmother, aunts, uncles, cousins,
nephews, nieces, and so on. Your relationship with each of them as
individuals will need to be considered, as well as their
relationships with each other.
Emotional support
Make sure your family know about your IBD, and how you feel on a day
to day basis. Silence can sometimes be deafening if they do not know
what is wrong with you! Are you just having a bad day, or is it
something more significant, something more worrying? Is it something
they need to help you with (getting you to the doctor for example)
as opposed to letting you get on with it, and deal with it in your
own way?
What to say to different family members?
Through communicating about your IBD, you and your family can learn
to share the same vocabulary - which will help you share the same
normality. So, think about the different members of your family and
how you need to speak to them.
For example, your mother/father will have a different relationship
with you than your brothers and sisters. How you tell your mother
about how you need to plan for possible faecal incontinence on a
family trip will be different to how you talk to your brother, or
your grandmother. Or how you tell your teenage sister that you are
too tired to listen to her latest boyfriend issues (without her then
thinking badly of you) is a problem anyone with a teenage sibling
has, let alone someone with IBD!
Understanding the differences between your parents and your
siblings, while also seeing the commonalities, and modifying you
communications with them, is important in managing this. For example
what you might tell your older brother about any issues IBD brings
you when going on a date will be different to what you might tell an
older sister (and will differ from what you tell your mother).
However, the common theme is that you are a family, and while some
family members may be a strong support to you, others may try to
shield you (dads with their little girls for example) while some may
want to distance themselves from you as a result of their fear,
ignorance or immaturity. It is important that you try to communicate
to your family not only as a group, but also as individuals - some
families find they become closer as a result.
What if you are newly diagnosed?
If you are newly diagnosed, or if your illness has entered a new
stage, things may seem unfamiliar and difficult/frightening while
you (and your family) adapt to the new situation. Over time,
however, the new circumstances will come to be seen as 'normal'. You
and your family may learn to treat the challenges your disease gives
you with a degree of indifference or even disdain.
It is important to remember to keep control of your response to your
symptoms; your symptoms should not control your behaviour. This is
important for others as well as yourself - remember that your family
members care about you, so they will worry about you if they are
unsure about how you feel, what you think, how you are managing.
Family activities
Normal family activities may be affected by your IBD, and family
plans may need to change, depending on how you feel at the time.
While you can still do activities, sometimes, just because you are
having a rough time, there may be disruption to normal family life.
However, you must communicate that not everything the family does
together depends on you being well - if you can't join in, it doesn't
matter; you shouldn't feel like you are letting anyone down. If you
had a broken leg you wouldn't expect to go swimming, or play
football - your IBD is the same in that, at times, it will limit
what you are able to do.
You must also make sure that you do not feel you are a burden to
your family; neither are you stopping them/inhibiting them for doing
things. Your communications with them, and them with you, must
reflect this important fact. So, make sure that everyone realises
that your symptoms should not be a burden to them at particular
times, or stop them doing things.
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Friends
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You
may need to discuss:
Who/what is a friend? Friends are people who you know well and
regard with affection and trust. In this way, a close friend will
feel like someone who is part of the family, especially if you have
known them for a long time.
Emotional support
A lot of the communication issues that apply to family may apply to
your friends - at least your closest friend(s). They will care about
you; they will worry about you - so you need to think carefully
about how to communicate with them. Sometimes, you will be able to
tell a close friend things about your IBD which you would find
difficult to tell your family. This is all part of building a
support network for yourself - and is actually true about many wider
aspects of life, not just communicating about IBD.
Trust
Not all friends are the same, so your communication with them may
have to be different. You may be happy that some of your friends
know about your IBD, while there will be other friends you may not
wish to confide in. Be comfortable about what you want to disclose,
and what you want to keep private.
Be conscious that friendships can come and go; trust and disclosure
is important, as once you have confided in someone, there is no
going back. However, when you have acquired long-term friendships -
with individuals you are very comfortable with - close friendships
can be a hugely beneficial. This is especially important when you
need someone to confide in, but without the emotional complications
that communicating with a partner or family can bring.
Be careful, as such confidences may be misinterpreted if they are
not judged carefully. For example, if you were to tell your close
friend something about your IBD (meaning also to tell your partner),
but in the meantime your partner found out about this from another
route, might they be upset? Similarly, if you tell your partner
something without telling your mother, might she be hurt?
This is not to say that you should not have such conversations; just
be aware of the possibility that an innocent conversation may cause
unnecessary upset. So, when talking with friends, it is important
that you consider how such communications might affect your
relationship with other groups, especially your partner and family.
Going out
Your friends will realise that some days there are certain things
you can do with them - other days they will know you can't.
Some days you may feel it is a big
issue when you can't do what you want to do with your friends (going
out, dating, travelling, visiting, socialising, going to the cinema,
having a drink). Remember, it only becomes an issue if you (and your
friends) let it. Yes, IBD can make your life frustrating at times,
but true friendship is for the long term.
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Employer
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You may need to discuss:
-
your illness and its effects on your work activities;
-
your legal responsibilities to your employer;
-
their legal responsibilities to you
Don't let your employer fill in the gaps! It is in your interest to
be honest and open with them: you'd tell them if you had a family
bereavement, and they would be happy to help (because they know what
the problem is). But if they do not know, they cannot help - and may
jump to assumptions about you which at best would be wrong, and
which at worst could be detrimental to your relationship with them.
However, it is possible that some employers may react badly... You
will need to carefully consider the way in which you disclose
information and weigh up the effect that it may have. European law
provides some protection, but often there is no legal requirement to
disclose illness, and employers documenting a chronic illness may
occasionally behave inappropriately.
Time off work
You may need regular time off work if you are having regular
treatments - therefore your employer needs to know, so they can help
you. Remember,
management of your condition must take priority.
If you, or your employer, let it become secondary to going to work,
you will soon become too ill to be able to go to work.
Trust is the basis of so many relationships, even with your
employer. If your employer knows about your IBD, you are entrusting
them with a confidence. In return, armed with this knowledge, they
should feel empowered to treat you with courtesy, respect, sympathy,
and to offer you support. If you are unwell, your employer will
understand why you may not be able to come to the office. There will
not be any mystery as to why you need to take sick leave, so there
is security on both sides.
Working effectively
If you
are an effective employee, employers will benefit if they look after
you. Just because you have IBD, it does not mean that you cannot do
your job, contribute to the company, or work effectively.
Many, many people with IBD manage to work, study, achieve targets
and contribute with the support of their employers. Being honest and
open with them can make going to work a lot easier. Open
communication about your needs will allow flexibility, which should
reduce worry about the impact of your symptoms upon work.
Discussing your IBD
So what do you say to your employer? Again, it is very much a
personal thing, depending on your confidence in that person, your
level of trust in them, and your perception of how they can deal
with this information.
It may be that you do not need/want to go into details (e.g. about
toilet issues, or symptoms, or the emotional aspects of your
disease) but would rather keep the conversation at the level of (for
example) needing regular toilet breaks (on some occasions) so you
will be away from your desk. It may be that you need to explain that
some days you will feel more ill than others, so may not be able to
take on particular tasks in the office.
Some employers may need guidance as to what they should expect - as
they may decide to find out more about IBD from independent sources
and the information they might find (for example on the internet)
may be of variable quality, or may not apply to you.
On the other hand, some employers may feel happy for you to take the
lead, and for you to let them know about your particular needs, on
any given occasion - i.e. trusting you to manage what support you
require from your work in an honest, trustworthy manner.
Communicating with your employer can be challenging, and will very
much depend upon your personal circumstances, but it is important to
do.
Legal responsibilities
If you are a new employee, as part of your employment contract you
MAY need to disclose that you have IBD, whether you perceive it will
affect your ability to do your job or not. If you are unsure, you
should ask advice from your Union, from Citizen's Advice (or an
equivalent independent counselling service), your healthcare
practitioner, or others with IBD.
Where your employer has difficulties in coming to terms with the
requirements of your illness, and supporting you in these, you may
need to seek help and advice from a wider circle within your support
network (partner, family, physician), or try some other way of
communicating with them - perhaps
involving that individual's senior management, or your Union or
Human Resources?
Remember, there are a whole range of different
conditions which legally require such support; IBD is not unique in
this respect.
Specific employment rights vary by country. Your national IBD
association may have useful information and links on employment and
discrimination. See the
EFCCA Member Associations list (also at the top of this page)
for a list of national associations.
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Work
colleagues
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You may need to address: how much you want them to know about your
illness
Let us assume your boss knows about your IBD. It is therefore very
much up to you how much you want to disclose to your work
colleagues. You do not have to disclose anything you don't want to.
Some people may be happy to share information, others may not - it
really is a personal matter. In any case good colleagues should not
pry into your medical or personal life, and if you do decide to
share information with them, they should be understanding and
respect your privacy.
If you need time off, that is an issue for you and your boss, not
your work colleagues. However, you may feel that you should explain
why to them, either to make yourself feel better (because you think
you should) or to stop rumours. But, this is up to you, depending on
how confident you are in disclosing any information, and how much
you trust them.
Perhaps a good strategy is to make a conscious decision about what
you want to be (open, partially open, private) and stick with it for
a while. This at least gives you the confidence of a consistent
approach with everyone, and limits the likelihood of gossip
starting, depending on who you have talked to, and you who you have
not. In a professional work environment, gossip or rumour should not
happen of course; however, if it does occur it might be worth
challenging underlying attitudes which are often unhelpful and
misplaced.
It is useful to have a standard phrase
that you use to answer any sudden queries, so you can deal with an
immediate request for information without disclosing more than you
want. For example, a phrase like the following might be useful:
"I have Crohn's disease; sometimes I need a little time out to
manage the symptoms".
__________________________________________________
Health
Practitioner
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You
may need to address: any and every aspect of your illness
Remember to always be 100% honest with your healthcare practitioner
as they need to know what is going on: how
BAD it is. You may be able to (or feel you have to)
cover up with other people - perhaps tell them you feel OK - but
your healthcare practitioner really does need to know if you
are ill, depressed, afraid, struggling, in pain, etc. Your
therapeutic management has to be optimally designed for you and for
this to happen, you need to be open and honest with them. They are
there to support you.
Your healthcare practitioner is a resource for you - if you are not
open with them they cannot help you as well as they could.
Therefore, try to communicate wholeheartedly - it is your
responsibility to enable and empower them to give you the correct
level of emotional and practical support. In order for you to have
the best quality of life you need to have a good relationship with
your healthcare practitioner.
Remember to use your management plan; also remember to use your
fatigue diary or pain diary. Take these with you when you see your
healthcare practitioner, so you can remember your symptoms, as well
as remember how you dealt with things, so you can
discuss them effectively.
Importantly, although it may feel intrusive at times, your
illnesses, and its associated topics, are nothing unusual to them.
You may be asked questions which you may (sometimes) find
embarrassing, especially when you are first diagnosed. However, once
you have started talking openly about difficult topics, you should
find it gets easier and should be
less embarrassing.
__________________________________________________
Other
people with IBD
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You may be able to address: any and every aspect of your illness
It can be hugely beneficial talking to others who are also living
with IBD. You may find you are able to go into much more detail with
them than most of the other people you meet with because they
understand the intimacies of IBD
Other people with IBD will realise where you are coming from, what
you are going through - but they don't have to live with you, so
they can be completely neutral, objective, non-judgemental.
In
addition, because IBD can make you feel isolated, talking to other
people with IBD can make you feel part of a group, part of a network
of people who "understand".
They will help you put your disease into context; at any given time
there will be someone better off than you, or worse off than you, or
got over something you are dealing with, or be needing help from you
over something you have coped with. They will give you a different
perspective into your disease, and will also remind you that you are
not alone. See the
EFCCA Member Associations list
for a list of national associations.
__________________________________________________
Nosey
/ prying people
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You may need to address: how to ignore them
Nosey people tend to have different levels of personal boundaries
and are happy to talk to anyone about anything. If you are
confronted by a person who is asking a lot of questions, try not to
get too annoyed or angry - they may not even be aware that they are
intruding. Try to manage the situation instead - there are a few
strategies you can use. Having a few phrases ready in your mind may
help. For example:
"I'm sorry, I'm not comfortable talking with you about this"
"I'd rather keep that private, but thank you for asking"
Another strategy is to turn the conversation around by asking THEM
something about themselves. For example:
"...and what
about YOU? How are things with you? How's your bad back?" The
chances are they would love to get into detail with someone about
their own ailments!
Another strategy is just simply to change the subject, by commenting
on something that is observable in the environment, or with them.
For example, you can comment upon their perfume/hair/clothing, or
something happening in the background. This then allows you to plan
your escape.
Remember, you don't have to tell anyone anything you don't want to.
If you don't have confidence in the person, if you can't trust them,
if you feel uneasy about disclosing anything - don't! Don't be
bullied by them; your support network can help you if needs be, but
you must empower yourself.
This bit really isn't complicated. Walk away!
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