NTM & Mental Health

Impact of the diagnosis

It is important to stress that it is not all doom and gloom to learn we have NTM infection.  Sometimes it can be a relief after long periods of cough, breathless and fever to learn that you have a specific illness, a kind of label that explains your symptoms.  However, it can also be nerve-wracking to learn you have NTM.  Patients and their families may get worried and uncertain.  Cough and breathlessness are tough to bear and at first doctors may be unsure of the diagnosis.  The antibiotics prescribed can be unpleasant to take and difficult to remember. 

All this can make us anxious or demoralised.  It can also be frightening to learn that you have an illness with the word ‘tuberculous’ in it, and it is easy to think we might be a danger to others.  Our families and friends sometimes think so too when they hear the diagnosis.  This stigma of tuberculosis (TB) may make us concerned not to discuss our diagnosis.  Therefore, it is important to make clear to others that we do not have TB - perhaps by calling it MAC lung disease or something else that distinguishes it more clearly from TB.  Better still is to explain to people that we are no more a danger than is someone with bronchitis or asthma.  

• Patients with NTM may also have other illnesses such as bronchiectasis, or COPD. 

• When we suffer from several illnesses, we can feel low in our spirits and depression is more likely to occur. 

• Even though most of us will not be affected in this way, both patients and researchers in the USA regard anxiety and depression as key areas for research in NTM.  They want to know how to recognise when someone is fearful or low, and how such feelings may make us more vulnerable, unhappy and less likely to stick to long-term antibiotic routines.   

Anxiety and our breathing

As a response to feeling breathless or anxious; we alter the way that we breathe, often without being aware of the change in breathing pattern. Sometimes this means we hyperventilate or over breathe. This is not conscious, or your fault, it is your body’s response to breathlessness or anxiety. Over breathing is just breathing more than your body needs which means you breathe out too much carbon dioxide. This in turn triggers a ‘fight or flight’ reaction increasing anxiety and may lead to other very real symptoms including palpitations, pins and needles, light-headedness and a knot in your stomach. You can over breathe by breathing too rapidly or too deeply or both together. So finding ways to reduce this vicious cycle can make life easier.

First, become aware of how you are breathing. Sit comfortably and focus on how you breathe.

When you are relaxed, the breathing movement should be minimal at your shoulders / upper chest and mostly at your tummy. This is called diaphragmatic (tummy) breathing; it is relaxed and not you forcing your tummy out. This is the correct way to breathe.

Many people with and without respiratory conditions breathe mostly using their upper chest and shoulders. It is most noticeable when people are more breathless, and when pushing / leaning on your hands or elbows. It is ok to do this immediately after exercise (as the 100m sprinters do) but not for a prolonged time.

How do I correct my breathing pattern?

• First, sit comfortably – sitting with your feet up and your head well supported is a good place to start.

• Turn your palms upwards – this stops you pushing / leaning on your arms.

• Ensure you are breathing in and out through your nose. If your nose is blocked blow it first. It is ok to breathe through your mouth when exercising but resume nose breathing once you have recovered.

• To ensure you are breathing at a reasonable pace you could try listening to a ticking clock / app (assuming the ticks are 1 second) breathe in through your nose for 2 seconds, out for 3 seconds and pause for 1 second before your next breath. This will take your breathing rate to 10 breaths per minute.

Please be aware that changing the way you breathe is a long process – it won’t happen overnight as it is something we do without thinking about it. Initially just being aware of how you are breathing is a big step. Also if you have been breathing this way for a long time your body will recognise you changing your way of breathing and this may make you feel a little uncomfortable.