Big feelings

Mind Matters

Experiencing “big feelings”, which are generally negative feelings, is normal for people living with a lung disease or lung cancer. “Big feelings” often make you feel bad, sad or angry. They can be overwhelming and can last for minutes or days. Often, big feelings are not discussed by health professionals or if they are, they are glossed over. This section discusses strategies and techniques to help you manage the emotional side of living with a lung condition.

Loss and grief

Loss has two categories:  

  • Physical loss is tangible. For example: something stolen, lost or left behind, death of a pet or the loss of income. 
  • Symbolic loss usually involves elements of peoples’ lives which are intangible, although vital to them. For example: a divorce or relationship breakdown, chronic or terminal illness or the shattered hopes and dreams associated with the physical loss. 

Loss can leave people sad, bereft and grieving. Physical loss, because it’s more obvious, is easier to recognise. The person is “given permission” by society and themselves to mourn the loss. They are not seen as “broken” or “weak”.

However symbolic loss, such as a diagnosis of a lung condition or disease progression, is harder to recognise. The person and those around them may not immediately realise that a loss has occurred or may downplay the impact and put on a brave face. This attempt to downplay or be brave can result in the person feeling the grief experience more intensely.

“You do grieve and experience loss when someone is diagnosed with an illness. You find that your future is not as you planned and has changed dramatically.” – Anonymous, living with a chronic lung condition.

While loss and associated grief can feel very distressing, it actually plays an important and often significant role in people coming to terms with the gravity of living with a lung condition. Grief acts as an adjusting emotion. But it can also take you on a rollercoaster of overwhelming feelings and emotions like fear, sadness, anger, denial, disbelief, worry, anxiousness, helplessness, guilt and impatience.  

These feelings and emotions can hit like a tidal wave when you least expect it. They tend to cycle around and can change from sadness, to anger, to denial and back again to sadness. These emotions are not felt in a linear progression; they happen in no particular order and can fluctuate.  Over time, as you adjust to a “new normal”, the grief reaction should decline and you will begin to feel more normal again. If these feelings increase or don’t naturally begin to fade away, seek help from a mental health professional. 

Fear

Fear is one of the emotions that alerts you to something not being safe, good or welcoming. Fear helps to keep us safe but when it gets out of control, it can make life miserable. People with lung conditions can experience greater levels of fear due to factors such as the unknown, breathlessness, exacerbations, disease progression and mortality. 

Fear can be experienced in many types of ways. People living with a lung disease or lung cancer are likely to experience a particular type of fear that comes from the impact of the condition. This fear is like an inner minefield; the silent thoughts that haunt quiet moments and force your brain to consider the ultimate realities and possible consequences of having a lung condition. It is these fears that can leave you feeling vulnerable, scared, isolated and alone.  

There are many times that the wisest course of action is to actually allow yourself to be scared, worried or fearful. It is only when you acknowledge these big, “scary” feelings that you will begin to feel more in control. Feeling fear at certain times is normal and to be expected. If you feel like your fear is getting out of control, that is an almost certain sign that you might benefit from talking to a mental health professional. They will be able to give you strategies to help get it back under control.

Other Big Feelings that get in the way

As well as fear, many people can experience higher than usual levels of anger, sadness, hopelessness, worthlessness, irritability, frustrationstress and impatience. Noticing that you might not be as calm as you once were, is yet another normal reaction to living with a lung condition

Mental health care plan

A mental health care plan is developed with your GP.  It can assist you to access mental health professionals such as psychologists, social workers or occupational therapists. The plan can help to make appointments more affordable. You don’t have to be diagnosed with a mental health condition to talk to your doctor about whether a plan would be suitable for you. It’s normal that you might feel nervous about starting the conversation but your GP will commonly discuss these plans.

Stigma and lung disease

People who perceive that they are being stigmatised will often feel guilt, shame and embarrassment associated with their condition, regardless of whether they smoked or not. Everyone, regardless of how they developed a lung condition, deserves support and understanding. 

When to seek help? 

Help can come in many forms including from family, friends, neighbours or medical and allied health professionals.  

Feeling sad, fearful, worried and low are normal and expected reactions to a diagnosis, exacerbation,  progression or recurrence. But it’s important to seek professional help from a mental health professional when these big feelings cause significant distress and begin disrupting your life. 

“When it comes to dealing with mental health and emotional issues you are confronting, you need to have a willingness to reach out for help and not care what people think.” – Anonymous, living with Chronic Obstructive Pulmonary Disease.

Trying to work out what are normal and expected feelings can be difficult.  One strategy is to track the frequency of your feelings of significant distress. You should also consider the impact the distress has on your daily life; this can help you to understand what a normal emotional reaction is and when you might need to reach out for help. 

Ask yourself the following questions: Is my distress significant most of the day, on most days and for a period of time that is uncomfortable? Does my distress prevent me from living my best life and carrying on with life the way I would like to? If your answer is yes, seek assistance from a mental health professional.  

Another good indication you may need to seek help is if you or loved ones begin to notice that you are “not your normal self”. These changes may include less patience, feeling snappy, increased daydreaming, disturbed sleep or wanting to sleep more, changes in appetite or a loss of interest in things that normally bring you pleasure. These are all indicators that you might not be coping in helpful ways and may need some support to get yourself back on track. 

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Mind Matters was part funded by a COVID Response Grant from MSD.