This section will describe some of the thoughts and emotions that are possible and help you to understand why you might have these feelings. It includes some suggested coping strategies and ways in which you could help yourself. These are drawn from evidence-based psychological practices, as well as feedback from patients about what has helped them. It is important to remember that not everyone will experience all of these feelings, but it is equally important to emphasise that if you have some – or all – of them, you are not alone and it does not mean that you are weak or mentally ill.
Shock, disbelief, helplessness and feeling out of control
These feelings and sensations are common when people experience something outside of the realm of their normal experience, like a diagnosis of a serious illness. The situation can feel threatening and people wonder whether they can cope. These thoughts and feelings can be so overwhelming that people become shocked or numb as a means of protecting themselves. Some people describe a sense of unreality.
- Time is needed for the information to sink in and to be ‘processed.’
- It can be helpful to talk things through with others and to express feelings. This helps people to make sense of their situation and to think about how they will cope.
- Having access to the right information at this time is important. It can be difficult to take everything in, so it can be useful to write questions down that need answering or clarifying by the healthcare team.
- ‘Grounding’ techniques can be useful. These are simply things people can do to bring their awareness to the reality of the present moment, in other words to feel less detached or unreal. You can find more information on grounding techniques at getselfhelp.co.uk.
Worry, anxiety and living with uncertainty
MDS often carries with it a degree of uncertainty which can lead to worry and anxiety. It is normal to experience fear about something which is threatening. The emotional response to fear is anxiety, or even panic. This tends to be driven by the physical response to fear, which is a release of adrenaline into the blood stream. This leads to many of the physical symptoms of anxiety like increased heart rate and dry mouth. The mental part of fear is worry. This is what people do as they try to predict and control things that might happen in the future. While it is normal for people to worry about their illness to some degree, excessive worry will lead to chronic anxiety and exhaustion.
- Managing the physiological part of anxiety is key. It helps to reduce the emotion of fear and to stop the pulse - and thoughts - from racing.
- To do this, it is necessary to reduce hyperventilation (over breathing) and excessive adrenaline production, which are always present in anxiety.
- Slow, controlled breathing is the most effective method. Practices like mindfulness and meditation can be useful, but there are a number of different breathing exercises that are helpful. For examples of these online, visit getselfhelp.co.uk and patient.co.uk
- Reducing tension in the muscles is another means of alleviating anxiety.
- A widely-used technique is called ‘progressive muscle relaxation’. This gets people to consciously tense and un-tense their muscles to induce relaxation.
- Notice your negative thoughts and worries and write them down to challenge them.
- Take gentle exercise.
- Various forms of distraction, or mental exercises like Sudoku, can help.
Finally, a vital aspect of managing worry is to accept that some things you cannot know in advance or control. Also, while it is possible to reduce some of the symptoms of anxiety, it is not possible to eliminate them altogether. As human beings, we all live with a degree of anxiety. A useful means of managing uncertainty is to focus on the ‘here-and-now’ – on the things you can change, and on the things that you find meaningful and enjoyable in the present moment.
It is common for people to feel angry that they have been diagnosed with a serious illness. For a number of reasons it can feel confusing, unfair, or that it is outside of their control – for example, if the illness is rare, if they believe that they have a healthy lifestyle, if there’s no history of similar illnesses in their family, or if they believe that they have already had too many problems in life to cope with. Sometimes it can be difficult to know what to do with feelings of anger or to understand what – or who – the anger is directed at. As a result, anger can sometimes get directed at loved ones, or even towards one’s self.
- Although a sense of disbelief or injustice at being diagnosed with MDS is valid (and common), dwelling on the thoughts behind it tends to make the anger worse. Talk things through with others.
- Write down some of your thoughts and notice those that keep the anger going; try to change them or distance yourself from thoughts about things that have no explanation or cannot be changed.
- Use relaxation techniques, or exercise, for managing the physiological symptoms of anger (similar to those in anxiety, and also driven by adrenaline).
- ‘Venting’ anger at others tends to be self-defeating because it alienates people, rather than elicit feelings of compassion from them.
- Self-soothe. Treat yourself to things you enjoy; treat yourself with compassion.
We experience stress when we feel that we are under too much pressure or have too many demands being made of us and that we don’t have the resources to cope. Understandably, people can feel like this at times when they are ill and they are trying to cope with the demands of treatment as well as with other concerns, for example financial, employment and relationships. The emotional symptoms of stress can include low mood, anxiety and irritability.
- Relaxation techniques (controlled breathing, progressive muscle relaxation) and/or exercise to manage the physical, adrenaline-fuelled aspects of stress (which are the same as those in anxiety and anger).
- Notice the negative thoughts which contribute to anxiety, tension and irritability, producing adrenaline as they arise: “this is unbearable”, “I can’t cope”.
- Challenge negative thoughts by writing them down and coming up with more helpful ones e.g. “although this is difficult, I can cope (especially with support)”.
- Plan, prioritise, break things down into manageable ‘chunks’ (writing this out is helpful).
- Pace yourself, rather than doing too much or trying to cope with everything at once.
- Take breaks, and ‘time out’.
- Ask for help and support.
- Maintain a ‘here and now’ focus on things that are enjoyable and meaningful to you.
Guilt and blame
Although becoming ill is never anyone’s fault, it is common for people to experience feelings of guilt and blame about their illness. For example, people might question whether they became ill because of something they did, or their ‘lifestyle’. Some people might think that they are a burden on other people because they need their help, or because they are not functioning as they once were. Although these thoughts are common, they are not valid. They can be part of people’s attempts to find meaning in the situation, but what they do is to make people feel bad and distressed about themselves.
- Write guilt and blame thoughts down and try to come up with more balanced and rational thoughts.
- Don’t dwell on these negative thoughts.
- Think about what you would say to a close friend or loved one if they were having these thoughts and feelings – and apply this to yourself.
- Make a conscious effort to be more compassionate towards yourself.
- Do some things which are comforting and soothing.
Sadness, low mood, hopelessness and despair
It is natural and normal for people to experience feelings of intense sadness at times when they are ill. Sometimes it can feel that things aren’t going well or that they will never be the same again. Some days people can feel very down, but usually these feelings are temporary and people tend to say that they have ‘good days and bad days’.
Depression is when people feel persistently sad and hopeless for two weeks or more – and when these feelings are combined with having no interest or pleasure in life, having disrupted sleep and appetite, feeling worthless, and people thinking they would be better off dead.
To some extent, sadness, low mood and clinical depression sit along a continuum. At one end, sadness tends to be an appropriate response to a specific situation, which fluctuates and gradually diminishes over time. In the middle, people can have ‘down days’ or ‘feel blue’. At the other end of the spectrum, depression (often called clinical depression) is more severe and persistent, and it affects the whole of your life and stops you from functioning.
Dwelling on negative thoughts is one of the things that makes low mood much worse and keeps it going. Often the thoughts are self-critical and hopeless in nature; they are nearly always ‘black and white’ or catastrophic. It can be hard to ‘see’ or believe anything positive about life, but all too easy to notice and believe negative things. As with the other emotions, writing down negative thoughts and trying to change them can be helpful, as well as talking things through with others. This helps people to gain some perspective and to feel less hopeless.
The other thing that helps depression is doing more and engaging with others. This helps to increase a sense of pleasure and reward from life.
- Activate yourself as much as possible; do more, rather than less. Take gentle exercise and don’t stay in bed or on the sofa.
- Connect with other people.
- Consciously plan and schedule activities, social time and pleasurable things.
- Try to ‘capture’ negative thoughts and come up with more helpful and balanced thoughts.
- Remember to ask yourself: “is this a fact or an opinion?”; “what’s the evidence?”; “is there another way of seeing this?”; “what would I say to my best friend or partner if they thought this?”.
Useful online resources:
It is often helpful to seek support if you are sad or low in mood, but it is essential to do so if you are depressed, especially if you are feeling suicidal. If you are feeling depressed, talk to your GP and to your healthcare team so that they can organise formal support for you. Talking therapies can help, and medication if necessary.
Grief is what people experience when they are mourning people, things, or aspects of ourselves that they have lost. Grief includes most of the emotions described above, especially sadness, as well as a kind of yearning for what has been lost (in other words, you wish you could have it back). In the case of illness this might include previous roles and responsibilities, previously enjoyed activities, fertility, certain freedoms and choices, health and vitality. As grief is a normal response to loss, it cannot be rationalised away. Loss is something that people can learn to live with – and cope with – over time, especially as they adapt to their changed circumstances and engage with other aspects of life.
- Although grief is a normal process, a preoccupation with certain types of negative thoughts and beliefs, e.g. “I cannot cope without X, my life isn’t worth living now”, will make it worse and keep it going.
- It can help to write down and challenge thoughts like this.
- Especially helpful for grief is for people to be able to talk about their feelings and about what, or who, has been lost. For a while, many people who are grieving need to be able to ‘tell their stories’ again and again.
A diagnosis of MDS affects the whole of you, not just your body and the complex mixture of thoughts and feelings associated with a diagnosis of MDS is common and legitimate. Although they can be unpleasant, they are a normal response to a major life event. Emotional distress of varying kinds can be experienced at any point in your ‘journey’ but it's important to remember there is support out there and ways in which you can help yourself.