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Common emotional responses

CF is not only challening physically, but also emotionally. Common negative experiences and responses people living with CF often disclose, include the stigma surrounding CF, feelings of isolation and loneliness, and anger. These are all normal responses to the ups and downs of having a chronic illness.

Stigma

Stigma has emerged as a consistent concern for those living with CF, their families and carers. Stigma is defined as a mark of disgrace associated with a particular circumstance, quality or person. Persistent coughing, smaller stature, clubbing, premature mortality and frequent hospitalisations may have contributed to a stigma around CF. The result of such stigma may leave the person with CF feeling less worthy, with lower self-esteem, feelings of helplessness, worry and depression. Health related stigma is a personal experience with characteristics such as exclusion, rejection, blame and a devaluing self-worth as a result from anticipating negative judgement. Stigma has been demonstrated to impact health and quality of life.

Dan talks about stigma

Managing stigma

  • Connect with family and friends. You are loved for who you are, not what you have
  • Educate: raise stigma as an issue and ask for peers and family to educate others on misconceptions and advances in CF
  • Connect with members of the CF community. Identifying with others helps feel connected

Loneliness & Isolation

Loneliness is a feeling of distress people experience when social relationships are not the way they want them to be. Loneliness is an internal feeling of isolation and is a different feeling from being alone. We can still be in the company of others but feel alone, or be alone and not feel lonely. At an essential level, humans need social connection and loneliness signifies this need is not being met. Most of us will feel lonely at some point in time.

For people who have CF, or care for someone who has CF, these feelings may be made worse when you are unwell, if you are spending time in hospital or at home, or if you feel others don’t understand what you are experiencing or feeling. While everyone feels lonely sometimes. Long periods of loneliness or social isolation can have a negative impact on your well-being.

Over time it can:

  • cause aches and pains and headaches
  • affect sleep
  • increase tiredness or lack of motivation
  • impact physical health
  • cause a loss of appetite, sudden weight gain, or loss
  • increase the risk of depression, anxiety, and paranoia

Managing loneliness

There is a range of different things you can try to help manage loneliness. There is no one strategy that will work in every situation for everyone. Try, and practice, several approaches until you find the combination that works best for you.

Connect with friends and family: If they don’t live nearby, call or video call

Stay off social media: Most people feel more lonely when they feel they are missing out

Get out and about: Exercise, instigate a visit to friends, go to public places

Get involved in your community: Join a club, enroll in study, or learn a new skill

Volunteer: Helping others can help you feel more connected

Consider borrowing or adopting a pet: They can be great companions and provide support during times of stress, ill-health, or isolation

Get support: If loneliness or isolation is impacting your life you should discuss your concerns with someone you trust or your GP

CF Loneliness & Isolation

Anger

Anger is a normal emotion. We all get angry from time to time. We may experience anger in situations where we feel:

  • frustrated
  • powerless or not in control
  • mistreated or that someone we care about has been treated unfairly
  • embarrassed, shamed, or humiliated
  • fearful

Anger can help motivate us to stand up for ourselves and solve problems, speak to others about troubling issues and instigate change. However, anger can have a negative impact, and signs that anger has become problematic include:

  • relationship problems at home or work
  • overreacting to small issues
  • family telling you that you have an anger problem
  • violent or abusive behaviour
  • using alcohol and drugs to manage your anger.

Managing anger

Identify your triggers: What makes you angry? Write them down. Try to resolve them or practice how to better respond to them before they happen again.

Accept it’s okay to get angry sometimes: Try to express your frustrations by being honest, assertive and upfront about things that bother you.

Notice those early signs of anger: if you can, take some time out and walk away before anger escalates.

Identify and challenge negative thinking: Identify negative thoughts you may have. For example, they always say that, you are all against me, this is everybody else’s fault. This thinking can make you feel more angry. Learn to question and challenge this negative thinking.

Breathe. Meditation and relaxation techniques are proven to help reduce stress by allowing the nervous system and body to resettle into a calm state.

Read Shaun's story on anger