Distress is a normal human response to loss or stress. Any serious illness can bring both. The exact combination of losses and stresses are unique for each person, but there are some common signs of distress:
You may feel very distressed after your diagnosis, or after a flare-up in symptoms or another change in your disease. You can also expect your distress to ease over time as you begin to adjust.
Adjustment is the way we respond to any major change in our life. If we move house, or change job, or have a baby we change the way we think and behave in order to make our life as good as it can be (for us) in our new circumstances. For example if you are meticulously tidy and you have a new baby, you may have to become more tolerant of mess. If you take a new job that involves night shifts you may need to adjust your social activities. A serious illness can require the same kind of adjustment, although you may resist adjusting to a diagnosis as you don’t want to change your lifestyle.
A key part of adjustment is adapting or coping strategies. Coping strategies are the things that we do to manage stress and loss in our lives. Sometimes these are about how we think. For example, reprioritising to focus on what is most important when our resources are lowered, or lessening our expectations of ourselves. Sometimes these are about how we behave, for example talking to family when we are upset, or having a hot bath when we are stressed. It’s important to remember that coping strategies aren’t ‘good’ or ‘bad’, only effective or ineffective.
If you have too few coping strategies, or if they are all quite similar (for example if they are all about physical exercise) and you can’t manage them now, or if your coping strategies cause more problems than they solve – for example overusing alcohol – it can be harder for you to adjust. Where adjustment gets stuck, you can end up with problems such as depression or anxiety .
Anxiety is a word that we often use to describe feeling nervous, stressed or generally worried about something. This is an entirely normal part of life given difficult or stressful situations, and leads to what is known as our ‘fight or flight’ response; this makes our heart beat faster, leaves us feeling breathless and sweaty and can cause us to tremble or become very tense. This response is designed to make us more alert and better able to respond to a situation if we need to. This kind of anxiety, or distress is a completely normal way of dealing with difficult situations, such as being diagnosed with a lifelong condition.
However, these feelings can become overwhelmingly strong and prolonged, which is not healthy. It is at this stage that you should consider talking to someone who can help as these feelings can be dealt with.
There are a huge variety of symptoms that you may experience if you are suffering from anxiety which can be both mental and physical:
Depression is feeling consistently sad for weeks or months at a time, and is an important condition to be able to recognise in yourself. Depression is not a sign of weakness, it is a genuine mental health problem with symptoms which are manageable with the right treatment and support.
There are a huge variety of symptoms that you may experience if you are suffering from depression which can be both mental and physical:
Depression can be triggered by difficult events such as grief or diagnosis with a serious health condition, although it can also be brought on with no apparent cause. You may be struggling to pinpoint a reason for your sadness and this may because there isn’t always one – not being able to find an explanation should not stop you from seeking help. People who have a family history of depression may be more likely to suffer, as are those who have suffered with depression in the past.
Importantly, depression may come on gradually so spotting the problem may not be so easy. Being able to recognise the symptoms in yourself is a vital first step to getting help, because depression is manageable with the right support and treatment.
There are many simple ways in which you can look after your mental health that you can easily slot into your daily lifestyle.
Having been diagnosed with a chronic condition, it is normal to be feeling symptoms of distress or struggling to adjust to your new lifestyle. One of the most important ways to prevent these feelings from escalating is to speak openly about your feelings with those close to you. It may feel awkward at first but you may find that just by being listened to, you will feel more supported and less isolated. You may find it hard to make sense of how you are feeling or put your feelings into words for others to understand – a good starting point could be to write a list of how your illness has impacted on your life and how each aspect makes you feel or what it makes you feel like doing.
Remember, talking about your feelings is not a sign of weakness or something to be embarrassed by – it is a sign that you are taking control of your mental wellbeing and something others should learn from.
If you want to speak to or be referred for psychological therapy, ask your GP. In Scotland, there is a programme called cCBT or Beating the Blues. Your GP can refer you. It works well for people over 18 years old, it is a computerised form of Cognitive Behaviour Therapy (CBT). If you want to talk to a psychologist or therapist, your GP can also refer you to an appropriate service.
Exercise is a great way to ease feelings of stress or anxiety or to generally enhance your mood. Regular exercise has a powerful effect on the brain – it can boost confidence and self-esteem as well as helping with functions such as concentration and sleep. Experts recommend at least 30 minutes of exercise on 5 days a week, but you should just try to fit in what you can. This does not mean you need to make time to go for a run or attend the gym – simple changes can make all the difference. For example, if you would normally get the bus to work, try getting off the bus a few stops early and walk the rest of the way. Things like housework and gardening are also great ways to keep active.
You may find your condition has had an impact on your ability to exercise the way you used to, but it is important to focus on what you still can do and adjust your activities accordingly. This section (link to exercise section) has some helpful advice on the type of exercise which may be suitable for you.
What you eat and drink also has a huge impact on your mental health. Try to follow a healthy balanced diet including foodstuffs such as: fruit and vegetables, cereals, nuts and seeds, dairy products, oily fish. Drinking plenty of water and limiting intake of sugar and alcohol is also important. There is more information regarding your diet here (link to diet section).
Some people drink in excess to deal with feelings of anxiety or depression, but the effect is short-lasting and ultimately detrimental to both your physical and mental health. If you find yourself becoming reliant on alcohol as a coping strategy, this is not healthy and you should seek help in finding alternative ways of dealing with your condition. There are a variety of websites and organisations which can help you to get back on your feet. (links to websites) Even just speaking to someone you trust or going to your GP can make the difference.
You shouldn’t allow your condition to stop you from doing the things you enjoy, so try to find time for your hobbies. If your condition interferes with your ability to do any of these, then see it as a good opportunity to explore other hobbies and pastimes. You may find an alternative which you enjoy even more, such as drawing, writing or playing an instrument.
Sometimes it can be difficult to prevent your feelings from overpowering you. If you are experiencing any of the previously mentioned symptoms and you do not feel able to overcome them by yourself, then you should speak to your healthcare provider on how they can help you.
Cognitive Behavioural Therapy is a therapy which focuses on how the way we think and behave impacts the way we feel. It usually involves meeting with a therapist for a series of one-to-one sessions, but it can be done over the phone or in a group. You and your therapist will consider how your illness has changed the things you are able to do, and the impact that has had on the way you view yourself and the world. They will support you to make manageable changes to improve how you feel.
Interpersonal Psychotherapy is a therapy which focuses on the quality of the network of relationships we have. It usually involves meeting with a therapist for a series of one-to-one sessions. You and your therapist will consider how your illness has changed the type of support you need, and whether and how you can access that from the people around you. They will support you to develop the number and kinds of relationships you need.
Medication tends to be a last choice treatment option, as many people respond well to the psychological therapies mentioned previously. These can be especially helpful as they target the problem at the root to help you deal with the trigger. However, sometimes these therapies are not entirely effective, and your doctor may discuss adding a medication to your treatment plan to help you control your symptoms.
Whatever way you are feeling, remember you are not alone.
Alan, who suffers from rheumatoid arthritis:
Alan was a busy dad to three small children when he was diagnosed with RA. His own dad had left the family when he was small, so being a ‘good dad’ was incredibly important to him.
When his RA flared up, he had to cut back his hours as a taxi driver, and his physical activity. Alan was convinced that he couldn’t be a good dad to his sons if he couldn’t buy them things or play football with them. Every time he had to say no, his mood dropped a little, and as his mood got lower, he had less and less motivation to do even the things he could still do, like playing computer games with his sons.
Alan constantly criticised himself for being a bad dad, and his anger at himself made him irritable with his wife and sons. They started to avoid their grumpy dad, which only made Alan feel worse. As time went on, Alan sank further and further into depression, struggling to sleep well, losing his appetite and generally falling into habits which made his RA more liable to flare-ups.
We would suggest that Alan would benefit from speaking to his GP. If appropriate his GP might refer him to a psychologist. It would help Alan if he could find ways to adjust to his diagnosis of RA and to adapt to the activities he could do with his children. This would help hom to feel more positive about himself and his future.