- Learning to manage emotional distress - COPE
- Apply the COPE Management Strategy:
- Finding Support
- Managing Difficult Emotional Experiences
- Living well with IBD
- Live Life
- Eat Well
- Exercise Your Body
- Soothe Your Mind
- Seek support
- Become a self-manager
- Living with someone diagnosed with IBD
Diagnosis: the beginning of the journey
There’s no doubt that IBD can have a significant impact on many aspects of daily life. The physical effects of the condition vary in degree and there’s no standard experience, as every person is different. Likewise, the effects of IBD on the same person can change over time. Someone who has Crohn’s disease or ulcerative colitis is likely to experience a wide range of emotions at different stages of the disease. These may be related to the disease itself, its treatment, or its impact on daily life.
For many, a diagnosis of IBD comes with a sense of shock and disbelief: is it really possible that I have to put up with this condition for the rest of my life?
It’s not uncommon to somehow feel detached and dissociated from yourself as the diagnosis is delivered. You might be in shock. But you might also feel relieved to finally know what’s been going wrong, while still feeling fearful as you ponder an uncertain future with IBD.
What can be said at the outset is that: you’re most definitely not alone.
These feelings are only natural and can even crop up again from time to time during the course of your disease. But once the initial shock of the diagnosis has worn off a little, you might find it useful to remind yourself that most of those with IBD can and do lead normal lives, complete with career, family, friends, travel and various leisure activities. Also, life expectancy with IBD is normal. There might be some additional challenges along the way but, for the most part, you can expect to lead a normal life.
In the meantime, it is common to feel confused as you grapple with feelings of anger, despair, frustration and a sense of loss of control over your own destiny. You will probably look for reasons and causes. At present, there’s still no answer to the question of why IBD affects some people and not others, other than to say that it is likely caused by a combination of genetic and environmental factors that set off a ‘super-active’ response in a susceptible person’s immune system. Once you’re able to come to terms with the fact that your IBD wasn’t preventable or avoidable, negative feelings can give way to more positive thoughts about how you can best control your condition so that it doesn’t control you.
In the days, weeks, or months following your diagnosis, you will probably feel a sense of loss, anxiety, and depression as you realise that a big aspect of your life has now changed.
You may feel varying degrees of:
This is not surprising. These emotional reactions are typically associated with the diagnosis of a chronic illness and are considered to be normal. But this is not necessarily what you want to hear; they’re not a normal experience for you and possibly the emotions are uncomfortable and distressing. You don’t want to feel them. For some people, the emotional experience can be more difficult to manage than the illness itself.
Learning to manage emotional distress: how do you travel?
The diagnosis of a serious illness or the recurrence of disease symptoms after a period of relative good health can affect the very core of our beings. They can affect:
- Our self-esteem – How we see ourselves
- Our self-confidence – What we feel we can do and achieve
- Our sense of worth – How we think others see us
Having a comfortable level of self-esteem, confidence and self-worth are all central to healthy emotional and psychological functioning in our day-to-day life.
Following a diagnosis of IBD, it’s expected that you’d feel some degree of shock, anger, anxiety and depression. It’s fairly certain that these are things you’d much rather not be feeling.
Allowing yourself to experience uncomfortable emotions is part of the road to feeling better. It’s about acknowledging your feelings and recognising that you’re entitled to have them. This is often referred to as a ‘normalising’ process. It takes away the responsibility or guilt you may be harbouring unnecessarily, for what may well be a legitimate experience.
Normalisation of the experience doesn’t necessarily alleviate all the uncomfortable emotions but it does reduce the sense that you’re fully responsible for your feelings, or that you could alter reality if only you tried harder. Try not to judge your feelings too harshly. They could be offering you important clues as to how you can come to terms with your experience of IBD and assist you in making decisions about your future. Be patient with yourself and with what you’re feeling.
The next stage is to identify a problem-solving strategy that works for you.
Health professionals have developed a management strategy that is simple in design and based on four key ideas. It’s easily remembered by the word it spells COPE.
C for Creativity
O for Optimism
P for Planning
E for Expert Information
The first step in the management strategy is to identify a central issue. Then refine the issue and simplify it so that you can understand it in its true essence. You may be experiencing many different problems that all seem to be inter-related. But try to choose one(s) that you can work on and which will make a significant and positive difference to your life.
Then apply the key concepts of the COPE strategy. These are:
- Creativity – Look for different pathways that you could implement to manage a particular challenge. Then adopt the one that you believe is most likely to work for you.
- Optimism – If you believe there’s a good chance of succeeding, you’ll do your best to make it happen. If you think at the outset that the problem is hopeless and that nothing will work, you’ll become easily discouraged. Try to be realistic in terms of your optimism.
- Planning – Break down the management pathway into small achievable tasks. Consider the advantages and disadvantages of the different approaches. Rather than focusing on identifying an immediate one-stop solution, be prepared to modify parts of your plan as you go along should you encounter an obstacle.
- Expert Information – You might not exactly know how to define the problem in the first instance, or how to achieve your plan. Just keep in mind that a lot of people can work with you, including your GP, specialist, nurse, psychologist, social worker and other experts in the community. You can choose and decide who can give you the best expertise and support.
Solving problems is not always a straightforward, logical process. If you’re already distressed, you might take a quick and easy approach. On the other hand, adopting an approach that takes time but gives you the and valuable opportunity to learn along the way usually results in a better outcome. And if you encounter obstacles, or feel that success is eluding you, you can always return to the COPE principles.
Let’s take an example.
Identify the central issue:‘I’m feeling isolated.’
Refine the central issue: Feeling isolated is a major issue that might have external and/or internal origins. The issue of ‘isolation’ on its own is perhaps too big and too vague to tackle successfully. It needs to be broken down into smaller component parts that can be worked on individually
Step 1: Ask yourself what’s brought about the feelings of isolation. Externally, are you lacking social contact because you’ve been unable to go to work or school or have become ‘housebound’ either by choice or necessity? Or internally, if you have been able to maintain a level of social contact, are you feeling isolated because deep down inside you think that no one understands you and what you’re going through and never will? Let’s say it’s to do with a lack of social contact after a couple of weeks in hospital for surgery and several more weeks at home to recover.
Step 2: Is the lack of social contact mainly to do with family, friends or the work/school environment? Choose the one that is bothering you most at the moment. Let’s say it’s to do with friends.
Step 3: Think realistically and be honest with yourself. Have your friends seemingly ‘disappeared into the ether’ for reasons unknown even though you’ve tried your best to stay in touch? OR, have you consistently rejected their approaches because you were feeling too sick, too tired, too embarrassed, too low at the time for company? Let’s say it’s to do with you rejecting their approaches.
Step 4: Choose one or two friends who mean the most to you. Then make the effort to reconnect.
Apply the COPE Management Strategy:
Creativity: You could ring, e-mail, or text your friend/s to say: ‘G’day. I’m so sorry it’s been so long since I’ve been in touch. How’s it going?’ Even if you don’t feel up to a social encounter just yet, they’ll be pleased to hear from you.
Optimism: Give them the benefit of the doubt. Understand that some people might not have to skills to cope with another person’s illness, may have their own life issues to deal with or, if several months have elapsed since you last connected, may simply have decided to move on. Don’t assume anything at the outset. Perhaps they thought they were doing you a favour by giving you the time and space to get yourself sorted. Or perhaps they were a little bit annoyed that you rejected them (possibly more than once?) when they were simply trying to be a friend. A true friend will be there for you no matter what, but friendship is always a two-way street.
Planning: Before making contact, think of things you could do when you do reconnect. Given that you’re the one making contact, it’s up to you to have some ideas in mind. If you’re not yet up to going out to cafés, restaurants or movies, keep it simple. Invite them over to your place for lunch or afternoon tea or to watch a DVD. And if that’s still too difficult, simply tell them that you haven’t forgotten them and that you’re looking forward to catching up when things get better. Then be sure to follow up on your promises, even if it means ringing them again to say that you’re not quite right yet but hope to be soon.
If you don’t hear back from them after you’ve made contact a few times or if they’ve repeatedly declined your offers of getting together, you may have to revise your optimism.
indeed, have decided to move on for their own reasons. Try not to be too discouraged. Life is dynamic and it never pays to look back. You too might need to move on. Try one or two other friends and use the same approach.
When you do make contact, it’s important that the conversation is not just about you and your illness, although that can also be an important part of reconnecting. Take an active interest in their lives and activities so that they’re getting the positive re-enforcement that friendship provides. Importantly, give them the opportunity to be there for you when you need them. They’ll regard it as a privilege and an honour if it’s not abused!
Expert Information: Discuss your feelings of isolation with your clinical team, perhaps your GP or nurse. They’ll have dealt with this same issue many times over and may have other methods for you to consider. An example might be an IBD Support Group in your neighbourhood, which can provide a good opportunity for you to share your feelings and frustrations with those who share your experiences, and possibly make new friends in the process.
Once you’ve learnt to apply the COPE principles to one aspect of your feelings, you’ll soon see how the strategy can be applied to others.
Finding support: travelling partners
Managing problems on your own is important. It gives you a sense of control, which in turn improves your confidence and self-esteem. It’s best therefore to consider self-management as a first strategy.
It’s not always possible though to have all of the answers to all of your problems yourself. At times it’s appropriate to find a travelling partner—someone who can share part of the problem-solving process with you. This can be a family member, a treating professional, a work colleague, a friend or a combination of different people. Whomever you choose, you need to trust that even though you will do most of the work yourself, your companion/s will be there to guide and support you along the way.
Trust your judgement as to who the right people are and what their role can be in this partnership. Remember that at times they might also feel a sense of helplessness with your condition. But at least you’ll have given them an opportunity to participate in a way that is useful and meaningful to you and to them.
Managing difficult emotional experiences: risks along the way
Despite all our positive efforts to manage the emotions of a diagnosis or ongoing illness, sometimes nothing seems to work. There might be times when you think that you’re completely losing your mind. This is not the case and it could be that you’re also experiencing depression or anxiety.
There’s established medical evidence that a diagnosis of Crohn’s disease or ulcerative colitis can result in a proportion of people developing either depression or anxiety. These are very real but treatable medical conditions that can and should be addressed.
Like IBD itself, depression and anxiety are not something within your control, and this is often difficult to understand at first. But effective treatments are available that will allow you to achieve emotional balance and gain a greater sense of control. This will be an important step in your overall recovery.
It’s only natural to feel down or distressed at times when living with IBD. You might have depression if, over a two-week period, you find that:
- you feel worthless or excessively guilty
- you feel sad, down or miserable most of the time
- you’ve lost pleasure or interest in most of your normal activities.
You might feel these alongside these other symptoms:
- a loss or gain of weight or a decrease in appetite
- sleep disturbances
- slowing down, feeling restless, or feeling overwhelmed
- feeling tired or having no energy
- experiencing poor concentration or difficulties thinking
- having recurrent thoughts of death.
Discuss the symptoms with your doctor or clinical team as soon as possible. Your symptoms could be the result of your condition or the treatment you’re receiving, or it may be that you’re experiencing depression as well. Your clinical team will be able to work it out with you and then explore the best treatment options.
Another common condition associated with IBD is anxiety. We all experience anxiety from time to time and it could be difficult to know what’s normal and what’s not, particularly if you have been unwell for some time. Also, the signs and symptoms of an anxiety disorder tend to develop gradually over time, which can add to the overall confusion.
You might have an anxiety disorder if, over a six-month period, on more days than not, you experience:
- feeling very worried
- finding it hard to stop worrying
- discovering that your anxiety is making it difficult for you to do everyday activities.
Discuss the symptoms with your doctor or clinical team. The anxiety you’re feeling could be the result of your IBD or the treatment you’re receiving, or it may be that you have an anxiety disorder. Your clinical team will be able to work it out with you and explore the best treatment options.
Living well with IBD
There is no doubt that IBD can have a major impact on one’s daily life. Abdominal pain and cramping, frequent diarrhoea, and extreme fatigue can make it difficult to just get on with things. Among those with Crohn’s disease, complications such as fissures, fistulae, and abscesses can add greatly to the overall discomfort and distress of the condition. Given all these, it is only natural to feel overwhelmed and at times frustrated that your life cannot be as normal as everyone else’s.
Fortunately, the treatments available for IBD make a huge and positive difference in improving quality of life. Effective treatment with medications and, where necessary, surgery can reduce or relieve symptoms and induce and/or lengthen periods of remission, vastly improving the daily lives of those with IBD.
Treatment aside, possibly the single biggest factor influencing the impact of IBD on daily life is your attitude towards the condition. Most people with IBD—including those with more severe disease—can and do live full and productive lives that include career, family, travel, etc. You must choose to be one of them! There will be physical and emotional setbacks along the way. Disease flare-ups and the constant (but necessary) routine of taking medications even when you are feeling well can truly wear anyone down. But a positive can-do attitude can be your best ally during good times and especially during those not-so-good times.
The first step in developing a positive attitude towards living with IBD is to learn to accept your condition. It is only human to wonder at first ‘How and why did I get this disease?’ or ‘Could I have done anything differently to prevent the disease?’ You’ll need to come to terms with the fact that there are no specific answers to these questions. IBD is neither preventable nor avoidable. It was likely caused by a combination of genetic and environmental factors that triggered a super-active response in your immune system. Once you realise that there is nothing to be gained by blaming yourself or your family for the condition, you will have taken the first step towards acceptance. And once you have accepted your condition, you can begin to identify ways in which you can control it so that it does not control you.
There will be times (e.g., during disease flare-ups or post-surgery) when it might feel next to impossible to drag yourself out of bed or off the couch, never mind out of the house. The trick is to avoid thinking that you will do stuff when you feel better or are not so tired, as this can eventually turn into a habit and a way of life. Continuing to connect with the outside world as best as you can and as often as you can will help you to maintain a positive outlook. And once you get that first foot out the door, you will most likely begin to realise that it is not as difficult as you imagined it to be. During difficult times or during disease flare-ups, you might find the following tips helpful:
- Whenever possible, get out of bed, have a shower, shave, brush your teeth, wear ‘outside’ clothes, and get ready to face the world. You will instantly feel better and be more willing to venture outdoors or receive company.
- Make the effort to go to work or to school, even if only part-time.
- Maintain contact with family and friends. Their various escapades and experiences can provide interesting diversions to your own situation and help you maintain your sense of humour. It will also keep you from feeling isolated.
- Read the newspapers, watch the news and current affairs shows on TV, go shopping, go to the cinema, or attend events in your neighbourhood. Staying in touch with the outside world will keep you interested in life and interesting to others.
The importance of a nutritious and well-balanced diet for IBD patients cannot be emphasised enough, especially for growing children. A good diet will give you energy and lessen the fatigue that often accompanies the active stages of IBD. Building up your body’s reserves of nutrients will also keep you in better physical and mental condition to cope with the down times, increasing the effectiveness of treatment.
- Aim to eat a well-balanced diet that contains a variety of items from all major food groups. This includes protein, carbohydrates, dairy products and ‘good’ fats and oils.
- Try eating smaller more frequent meals instead of a few larger meals.
- Keep a diary to track any foods that trigger your symptoms and then eliminate these from your diet during active stages of disease. Once you are feeling better, you can reintroduce them one at a time to see if you are now able to tolerate them. It is very important to maintain a healthy, well-balanced and varied diet. If you are avoiding many foods or finding that there are several foods that seem to trigger your symptoms, see a dietitian to ensure that you get all the essential nutrients you need.
- A dietitian can also help if you are not tolerating fibre well or otherwise need a personalised diet.
- The combination of diarrhoea and loss of appetite can greatly increase the risk of dehydration. Make sure to drink plenty of fluids, especially water, and especially in warmer weather.
- Parents: During active stages of your child’s disease, you might need to make concessions concerning the type and quantity of food he or she eats. The most important thing is to ensure that your child is getting an adequate number of calories each day to maintain growth and development, especially during puberty.
- Kids: Try to not fight with your parents about food. There might be times when you do not feel like eating or suddenly dislike certain foods. But always remember that you need a good diet containing meat, fruit, veggies, and dairy products in order to help you grow and mature normally. Your parents are trying their best to help you.
Exercise Your Body
IBD can affect on your physical fitness. Treatment with corticosteroids can affect your bone and muscle strength, surgery can affect your abdominal muscles, and overall poor diet and impaired absorption of nutrients can leave you feeling weak and lethargic.
Exercise is a quick-fix solution for mind, body and soul. It is often free, usually fun, raises the endorphin levels in the brain, and lifts your mood. And as long as you stay sensible, it could be the best activity for you.
There are many wonderful places for exercise and physical activity, but to avoid the nightmare of being stuck somewhere miles away from home and desperately needing to relieve yourself, look for options that will allow you to access a toilet with minimal fuss and disruption.
Some examples are:
- an exercise class in your local community centre/shopping centre
- an aqua-aerobics class in your local swimming pool
- a gentle exercise program offered by your local gym; weights are especially good for toning muscles and increasing strength.
If you feel comfortable venturing a little farther afield, consider—
- walking the dog
- riding a bike along the cycle paths
- strolling on the beach
- taking short nature walks.
—but make sure to scout out the location of loos beforehand so that you are always prepared should the need arise.
Incidental exercise is also a simple and easy means of incorporating activity into your daily life. To put it simply, incidental exercise is a method of doing exercise as part of your normal daily routine.
- Walk, not drive, to the neighbourhood shops.
- Tend the garden—but speedily!
- Do the housework and do it often. Vacuuming and scrubbing floors are especially good exercise.
- Play with the kids in a nearby park or your backyard.
- Go shopping and shop hard!
- Park the car some distance from your destination and then walk to and from it.
- Take the stairs instead of escalators or lifts.
- Walk while you are talking on the phone.
Once you develop the habit of regular exercise, you will find it hard to quit. It is an excellent habit to acquire, and the fitter you are, the easier it will be to ride out the storm during those not-so-good times.
There is also no reason for children and adolescents with IBD to not participate in sports and various activities as long as they feel up to it. It will do them good physically and emotionally, and will help them keep in touch with their peers.
Soothe Your Mind
A healthy mind is just as important as a healthy body. If you can find an outlet for your creativity—whatever that happens to be—or any activity that allows you to forget your cares and concerns even for a short while, you will feel better overall. So go and watch a movie, go crazy with the karaoke, take out those paintbrushes and start your masterpiece, simply listen to some music, or get lost in a book—you will feel transformed.
You might feel that no one will ever understand your condition and what you are going through. You might feel ashamed about having an illness, especially one that requires you to rush off to the loo at a moment’s notice, possibly many times a day. Children and adolescents in particular can feel embarrassed and frustrated about being different from their peers and might want to hide the fact that they have a medical condition.
Every person with IBD has his or her own unique experience and has the right to work through the various issues at his or her own pace.
Keep in mind though that communication is a key strategy towards staying in touch with family, friends, colleagues, schoolmates, and the world in general.
- When you are ready, be open with family, friends and colleagues about your condition, even just briefly. Give them the opportunity to understand it and to support you.
- Your medical team will assume that you are doing well unless you discuss your concerns, so never hesitate to address quality-of-life issues with them. Let them know what bothers you. Maintaining quality of life is one of the major goals of IBD treatment.
- Parents: Let your child decide if he or she wants to tell friends about their condition. But be sure to let teachers, school administrators, and the school nurse know about their IBD so that plans can be put in place for time away, access to toilet facilities as needed, and taking medications during school hours.
- Kids: Talk to your parents and your doctors. Ask as many questions as you want. Ask again if you were not sure about the answer. You have a right to hear the truth but you also need to let others know what is bothering you so that bad situations can get better.
Planning can help you cope with some of the more troublesome aspects of IBD.
- Make sure you know where the toilets are located in restaurants, shopping centres, theatres and on public transportation routes.
- Take along extra underwear and toilet rolls whenever you go out.
- Carry your Can’t Wait card with you at all times.
- If you need to be hospitalised, take some things with you that can help you through this time:
– your own pillow
– books and magazines
– music and headphones for the times when you’re too tired or too sick to read
– some casual clothes so that you can get out of those dreaded hospital pyjamas!
There is a wealth of information available to you that can help you take more control of your life and your condition.
- Ask your clinical team about your condition, your medications, and other forms of treatment.
- Search the Internet for information but learn how to recognise useful websites, avoiding ‘charlatan’ websites. Some examples of useful websites are:
– Crohn’s and Colitis Australia™ (CCA) (www.crohnsandcolitis.com.au)
– Crohn’s & Colitis Foundation of America (www.ccfa.org)
– New Zealand Crohn’s and Colitis Support Group (www.crohnsandcolitis.org.nz)
– Crohn’s & Colitis Foundation of Canada (www.crohnsandcolitis.ca)
– National Association for Colitis and Crohn’s Disease (UK) (www.crohnsandcolitis.org.uk)
- Visit your local library for books and papers about IBD.
- Either through support groups or other sources (e.g., your clinical team), try to find others in situations similar to your own. Reach out to them, share your experiences, and give yourself a chance to learn from theirs.
- Sign up for membership with CCA to keep abreast of news, events, and current research relating to IBD.
Challenge yourself and those around you. Achieving even small milestones can make you feel better about yourself and your capacity to participate in all that life has to offer.
- If you feel you have been stuck in a rut for some time (e.g., after surgery), make a plan to get out of the house and then stick to it. Engage family members or friends to see you through the plan. If you truly do not feel up to it on the day, make a plan for another day. Having goals is the best way to move forward.
- In the nicest possible way, challenge your clinical team about their knowledge of new treatments and new research. You have a right to receive the best possible care. If you have genuine concerns that your current treatment is not keeping pace with available options, raise the questions. Not all practitioners suit all patients and vice-versa. You might need to change doctors more than once to find the right match, but do avoid endless shopping around as it could compromise your care and, ultimately, your health
Never let IBD hold you back from being who you want to be. Set personal goals for yourself, then go out there and get them. For example, you can attend trade school/university, travel, have intimate relationships, have a family, etc. There is nothing holding you back as long as you believe in yourself. There are bound to be extra challenges along the way but these are never insurmountable. The networks and support services already available for anyone with chronic illness keep improving all the time, and there are options available to you. If at any time you feel the need to re-evaluate your position or your feelings, you can always apply the COPE principles.
Chronic diseases such as IBD can evoke a wide range of emotions and lead to other conditions such as depression and anxiety disorders. If you feel that you are becoming less able to cope with the daily challenges of living with IBD, you might benefit from additional support. No one is ever expected to go it alone. The support of family, friends, colleagues, and your clinical team can help see you through the more difficult times. But they will never know you need it unless you ask for it.
- As best as you can, nurture your relationships with family, friends and colleagues. They care about you and will most likely rush to help you if you give them a chance. Do not take them for granted.
- Seeking support should be regarded as a strength, not a weakness. By allowing others to gain insight into your vulnerabilities, you can strengthen your relationship and give them the opportunity to feel useful. The way life goes, you never know when you might need to return the favour.
- Remember that you are not alone. Talk to others who share your condition. Support groups are often invaluable in this regard.
- A social worker, specialist nurse, or counsellor can be available as part of your clinical team. Don’t be reluctant to go to them for education and support, particularly if you feel like things are getting on top of you.
Become a self-manager
No matter how many people you have around to support you and no matter how useful, understanding, and loving they are, the one who’s ultimately responsible for your own well-being is yourself. Keep in mind that you control the disease and you control your life.
So don’t forget to:
- take an active interest in life
- eat well
- plan wisely
You will also need to:
- attend scheduled medical appointments
- take medications exactly as prescribed, even when you’re feeling well, as they may be being used to maintain remission; if you’re having trouble remembering to take your medications, place them by your toothbrush so that you can’t miss them.
- learn to recognise the signs that something’s not quite right so that you can prevent disease symptoms or complications from escalating
- report any side effects of medications
- be an active partner in your own health care.
We have said repeatedly that you can choose to control the disease instead of letting it control your life. We know that this is far easier said than done, but keep in mind that you have a vast range of support available to you, including your family, your clinical team, the community, information on the Internet, the government, and various health organisations, including Crohn’s & Colitis Australia. We are here to help, and you need never be alone.
Living with someone diagnosed with IBD
IBD undoubtedly affects the individual with the diagnosis. What’s often not acknowledged is that IBD also affects family members, friends and associates to varying degrees. While they might not have the physical symptoms themselves, they can have a sustained emotional response to another person’s illness.
Much of the information provided thus far in terms of individuals with IBD adjusting to the diagnosis and identifying strategies to manage their condition is just as relevant to those who are close to someone with the disease. Not having the diagnosis yourself doesn’t mean that you’re not affected, both in terms of what you see the person going through and what you experience in your own right.
If you are close to a person who has IBD, you will have to acknowledge your own experiences and recognise the importance of your role in terms of helping your friend, partner, or family member cope with the disease. You’ll need to accept and appreciate that you’re also vulnerable to difficult experiences and emotional distress. The COPE strategy outlined previously can also apply to you, and you are equally entitled to any available help.