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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.




Printer friendlySpouse/ Partner

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You may need to discuss:


  • your emotional relationship;

  • your physical relationship;

  • sexual issues;

  • intimacy issues;

  • financial issues.


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.




Printer friendlyFamily members

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You may need to discuss:  

  • your emotional relationship;

  • your physical relationship;

  • sexual issues;

  • intimacy issues;

  • financial issues.

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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You may need to discuss:  

  • your illness and its effects on you;

  • your trust in them;

  • your activities with them

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.





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.




Printer friendlyEmployer                                                                                                                                                                                      back to top 



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.




Printer friendlyWork 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".




Printer friendlyHealth 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.




Printer friendlyOther 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.




Printer friendlyNosey / 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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