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The Stress of CF in a “Normal” Life

Editor September 30, 2022

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– By Tina Clarke

Stress is the number one cause of disease, and although stress obviously doesn’t cause cystic fibrosis, it can make a major appearance in our everyday lives and exacerbate or worsen our symptoms. The vast improvements in average life expectancy in those of us with CF means that we are living longer with greater life quality, although aging with CF can also mean greater amounts of stress as we try to juggle what society deems as ‘normal life’ with our long daily treatment times, symptoms and exacerbations and often impacted career and income. Everyone encounters stress in their lives, but when you add cystic fibrosis into the mix, it can make stress and anxiety a chronic accompaniment to our chronic disease, reducing quality of life, aggravating our symptoms and potentially affecting our long term prognosis.

How chronic stress feels

It sounds odd but it is not uncommon that we are so used to having regular stress, worry and anxiety we don’t even realise that we are experiencing it. That is because our human body and brain is so adaptive that when we experience something regularly, it becomes our ‘new normal’. Stress feels a little different to everyone but here are some of the common signs that show we are experiencing stress:

SHORT TERM STRESS is a normal process to make us alert to danger, but should only last up to 30 minutes, and not too often:

• Increased heart rate or pounding heart
• Increased breathing rate; more in upper chest
• Nausea
• Stomach pains
• Sweating
• Racing thoughts or worries
• Feelings of wanting to run away or have angry confrontation

LONG TERM/CHRONIC STRESS is harmful and can lead to physical and emotional issues and can manifest in these ways:

• Anxiety
• Fatigue and tiredness
• Emotional instability
• Irritability or frustration
• Sleep difficulties, insomnia or disruptions
• Turning to food as a comfort or less appetite
• Brain fog (cloudy thinking)
• General feelings of unhappiness, even if your life feels mostly ok to you

The damage of chronic stress

We could think that as we seem to have adapted to it that we can just accept or ignore it, but in fact there is a great number of physiological (body) processes occurring within us that in the long term are harmful to our long term physical and emotional health. Long term stress disrupts our hormones, our immune system and every other system in our body; it can also lead to depression, anxiety, and feeling or wanting to disconnect from others. This kind of stress can be a major factor in causing chronic illnesses such as Irritable Bowel Disease, autoimmune disease and even cancer.

The Stress Process

One of the keys to dealing with stress is understanding how it shows up in you and having simple ways to start interrupting your stress response so that it doesn’t dominate your emotional experience or overwhelm you.

A brief explanation of stress can be given by referring to our nervous system – a communication web of nerve fibres that act as an interface between our body, our brain and our environment – and its threat detection system. Our most important objective as an human being is to survive, and that’s what our nervous system is mostly there for. When it detects “threat” in whatever form, it sends us into ‘fight or flight’ so that we can respond effectively. This is meant to be something we experience occasionally, but juggling life with chronic illness can mean we are faced with “stressful” situations weekly or daily.

For example, maybe you have a job to start by 9am and yet you are stuck on the phone to your medical supplier or insurance company trying to get an expensive new medication paid for, or rectify a mistake they have made. You can see time ticking away and yet you have two important things to achieve at the same time. Then add in if you have a child and you need to get them to kindergarten, or nebulisers and physiotherapy to do before you start work.

Or maybe you have a clinic day and you are feeling anxious about your test results. Imagine there is a newly discovered change in your results and you have to see yet another doctor who you have to get to know and trust…and then he/she ignores or discounts symptoms that are really bothersome to you and that affect your worklife and relationship.

There are many examples to show where stress has become a part of our ‘normal’ experience, but each time we get into situations like the ones above, our nervous system starts an internal chain reaction of physical and emotional changes. This then becomes an action that our nervous system recognises more and more quickly each time we experience a stressful situation, so our stress reaction becomes the new norm. In turn, our nerve pathways to relaxation, feeling supported, safe, autonomous and calm become less practiced and thus more difficult to achieve these more enjoyable states.

Interrupting the stress cycle

The stress response is very much a bodily reaction that then creates the corresponding emotional state. The physical stress reaction can come from our thoughts or a situational experience as exampled above. We will always have these sorts of situations as a person with CF, but if we start to communicate with our nervous system, we can literally change how our brain and body responds to difficult but common situations. This means that even though potentially stressful situations are part of life with chronic illness, it doesn’t mean that we can’t reduce our stress response by befriending our nervous system, understanding that it is only trying to keep us safe.

Where to start

Connection. One of the quickest way to go into a calmer, ‘rest and digest’ state is through connection; connection to yourself, nature, an animal (pet) or a loved and trusted friend, partner or family member. Dr Stephen Porges, Ph.d. Psychiatrist & creator of the Polyvagal Theory, says that as innately social creatures, connection is what makes us feel safer and supported and brings us back to a calmer state. That could look like stroking or even imagining stroking your pet, your friends hand on your shoulder or just his/her presence and soothing eye contact, a short moment outside noticing your natural environment or connecting to self may be placing your hand on your heart as you slow your exhales a little or self massage your neck and shoulders.

Practicing any of these sorts of things regularly as soon as you notice yourself becoming stressed will literally start changing your biology so that you can reduce your feelings of stress and come back quicker and easier to a more regulated or balanced state. Being aware of your emotional and physical states more regularly will also bring you more self-awareness, increase your self-compassion, which in turn is a stress reducer too.

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About Tina Clarke…