Wellbeing Hub
Resources and information to help you live as well as possible with your rare condition.
These pages are also available in other languages. Please use the menu in the bottom right hand corner.
Diagnosis
Looking for a diagnosis
Waiting for results, deciding on genetic testing, managing uncertainty
Early days
Receiving a diagnosis, reimagining the future, pacing yourself
Living with a rare condition
Rare challenges, ‘expert by experience’, living as well as possible
You and your emotions
Acknowledging your feelings, how to manage them, finding hope
Uncertainty, change & loss
Uncertainty
The challenge of uncertainty, managing anticipatory grief and anxiety
Change & loss
Types of change and loss, grieving the changes, recovering from trauma
Bereavement
Grief after bereavement, secondary loss, ways to cope, when to seek help
Grief
Acknowledging loss, growing around grief, reaching out to support
Talking about dying
Conversations about dying, practical matters and making memories
Relationships
Couples, sex & intimacy
Being a team, managing difficult feelings, dating with a rare condition
Parenting
Ways to recharge, supporting siblings, coping with difficult behaviours
Extended family & friends
Opening up conversations, asking for support, ‘who is good for what?’
Talking about your rare condition
Deciding what to share and when, talking to children & young people
Practical Strategies
Difficult feelings
Ways to understand and cope with difficult feelings
Managing worry & anxiety
Exercises for coping with anxiety and worry, journalling, self soothing
Managing stress
What stress is, and how to cope both short and longer term
Managing pain & fatigue
Mindfulness for pain, relaxation exercises and befriending your body
Wellbeing basics
Important foundations for mental wellbeing
Coping with Pain
The experience of pain
Different types of pain, your relationship to pain, pain and trauma, and fear of pain.
Talking about pain
Talking to professionals and other people about your experience, or fear of pain. Describing pain accurately to help access the best pain management approaches.
Different approaches to managing pain
Medical and psychological approaches, complementary and alternative medicine, the role of spirituality or religion.
Making your personal pain plan
Being prepared for pain flares, crises or managing chronic pain.
Supporting your child through pain
Coping with painful or unpleasant procedures, managing ongoing pain or pain episodes.
Witnessing pain: the impact on carers
How to look after your own wellbeing when supporting someone in pain.
Tiredness, Fatigue & Exhaustion
Understanding tiredness, fatigue & exhaustion
The causes and signs of tiredness, fatigue and exhaustion
Managing tiredness, exhaustion and fatigue
Activity scheduling, pacing, spoon theory
Managing fatigue in the workplace
Self-management strategies, making adjustments and understanding employer’s responsibilites
Sleep difficulties, including in children
Optimising the possibility of sleep, managing difficult thoughts feelings at night, coping with wakefulness, or interrupted sleep
Supporting someone with fatigue
Managing your own energy levels, changes to roles or responsibilities, and managing difficult feelings
Navigating healthcare
Appointments (and waiting…)
Looking after yourself during appointments, tests, scans & procedures
Being an in-patient
Preparing yourself, supporting children, what if things go wrong?
You and your medical team
Knowledge is power, multidisciplinary teams, who do you see for what?
Managing transition
New ways of communicating & relating, managing concerns, settling in
Sources of support
Rare condition organisations
Connecting with others, how to find the right support for you
General mental health support
Types of therapy & counselling, how to access, support for young people
Practical support
Financial, social care and education support, support for carers
Crisis support
How to access help urgently
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