Diagnosis reaction
Hearing a diagnosis can be shocking, especially if it’s unfamiliar. Some people feel relieved knowing the cause of their symptoms. Responses vary: some dive into learning everything about it, while others take time to process and seek answers. Importantly, you’re not alone — support is available from others diagnosed with Alpha-1.
Please feel free to refer to our member resource Managing Stress and Anxiety whilst living with Alpha – A lived experience created by a member of our Alpha family.
In the meantime, included below are some common emotional reactions that people experience when learning about Alpha as well as tips for handling stress reactions.
Emotional response
Your emotional reaction might mirror the grieving process: denial, anger, bargaining, depression, and acceptance. Other common emotions are confusion, anxiety, and fear.
Confusion
Stress can prompt immediate action, but with Alpha-1, you might feel uncertain. It’s important to be patient, ask questions, and seek answers. Take small steps rather than making drastic changes.
Disbelief, denial, and isolation
A genetic condition can be overwhelming, causing denial or withdrawal. While time alone can be healthy, avoid complete isolation. Communicate your needs to loved ones.
Anger
Feeling angry is normal. It’s important to express this anger constructively, perhaps through talking to a friend, therapist, or journaling.
Bargaining
This stage involves trying to make up for past mistakes (e.g., neglecting health, failing to exercise or smoking), often accompanied by guilt or regret.
Depression
Sadness is a natural response. This stage involves reflecting on how the diagnosis affects different aspects of life, helping in preparation for changes.
How long will this take?
It’s unpredictable how long it will take to accept a new diagnosis. Everyone processes emotions at their own pace, and it’s normal to revisit stages like confusion or anger.
Life beyond diagnosis – so what can I do about it?
Focus on what you can control: boundaries, thoughts, actions, goals, energy, self-talk, and handling challenges.
Start with your thoughts
Our thoughts, feelings, sensations, and actions are linked. Negative thoughts can trap you in a cycle. Changing your thoughts can change how you feel and act. Often, it’s our interpretation of a situation, not the situation itself, that causes distress.
Physical stress response – it’s not all in your head it feels real.
Stress activates the “fight or flight” response, causing physiological symptoms like increased heart rate and tense muscles. Cognitive Behavioural Therapy (CBT) techniques, like Cognitive Diffusion. The exercise below teaches you how to spot a thought, separate yourself from it, observe without judgement and then let it go.
This is particularly helpful when you notice a change in mood.
Cognitive Behavioural Therapy has been recognised by the NHS as an effective way of treating a
number of mental health conditions including stress and anxiety as well as other areas too.
Top tips for mental wellbeing
- Reframe unhelpful thoughts.
- Be in the present – practice mindfulness.
- Engage in breathing exercises and practice progressive muscle relaxation.
- Use tension releasers such as yawning, sighing, eye relaxation.
- Connect with others – maintain social contacts and activities.
- Live healthily, exercise, and engage in hobbies.
- Seek help if struggling with mental health.
- Do something for yourself – Pleasure and Mastery (hobbies, play/meaningful work).
Support resources
For more detailed advice and a supportive community, visit the Alpha-1 UK Support Group on Facebook. If you need help managing stress and anxiety, refer to resources like the NHS’s Every Mind Matters or discuss with an appropriate medical professional or qualified therapist/counsellor.
What is a Panic Attack?
A panic attack is a sudden, intense episode of fear that peaks within minutes, often without warning. Symptoms include:
- Rapid heartbeat
- Sweating
- Trembling
- Shortness of breath
- Chest pain
- Nausea
- Dizziness
- Chills or hot flashes
- Fear of losing control or dying
People may feel like they’re having a heart attack even if there’s no real danger. Panic attacks can occur without other mental health conditions. Fear of future attacks might lead to avoiding certain situations, worsening anxiety and/or fear of having future attacks.
Immediate actions during a Panic Attack
- Recognize: Identify and acknowledge the attack.
- Mindfulness: Focus on the present using your 5 senses. E.g., Five things you can see, four thing
you can hear etc. - Diffuse gaze: Soften your focus to feel calm.
- Breathing: Take slow, deep breaths (in for 4 counts, hold for 4, exhale for 4).
- Stamping: Stamping your feet can help control breathing.
- Muscle relaxation: Tense and relax muscles from head to toes focussing on releasing tension from your forehead, jaw and face first.
- Visualize: Imagine a peaceful place.
- Affirmations: Repeat positive statements.
Preventative measures
- Identify triggers: Keep a journal.
- Support network: Talk to friends or family.
- Relaxation: Engage in activities that reduce stress.
- Exercise: Regular physical activity.
- Healthy lifestyle: Eat well, sleep well, avoid anxiety triggers.
- Safety plan: Recognize early symptoms, use coping strategies, have a calm environment, and maintain emergency contacts.
If panic attacks continue, seek help from a healthcare professional or therapist.
If you have an Alpha related lung disease, it’s crucial to differentiate between a panic attack and a lung exacerbation. Shortness of breath with increased sputum (yellow, green, brown or black) and/or a fever may indicate a lung infection, exacerbation or more serious condition, not just a panic attack in which case you should obtain appropriate medical advice.