A LIFE CHANGING DIAGNOSIS
When a diagnosis is incurable or life-limiting - the impact is on more than just the body. But there is always hope and support.
Here is an extensive guide to help you find your way and begin to process a life changing diagnosis.
FIRST STEPS
Your world can feel like the bottom has just fallen out, everything changes in an instant.
The path forward is not without hope.
You can find a way to regain control, find some hope and even find a way to thrive.
We have worked with many people who have gone through the grieving process and found a way to enjoy life and thrive even with a secondary cancer diagnosis.
The first thing to know is - it takes time and having the right support system around you is crucial.
Hearing the words incurable, or being told a diagnosis is life-limiting can be devastating...
Understand Your Diagnosis
Gather Information
Request detailed explanations about your diagnosis, including the type, severity, and implications of the condition.
Research from reputable sources what your diagnosis means, and what it means for you.
You may be given a specialist nurse - they are available to contact at any time (often via email or phone) to ask questions in between appointments. Use them!
Questions to Ask Your Doctor:
- What exactly is my diagnosis? What does the future look like for my symptoms?
- What are the treatment options available? Is the purpose to cure or to provide symptom relief?
- What are the potential risks and benefits of these treatments?
- What lifestyle changes should I consider?
ACKNOWLEDGE YOUR FEELINGS
It's normal to experience a range of emotions...fear, anger, confusion, sadness.
There may also be a degree of relief (to finally have answers). Whatever you are feeling is perfectly reasonable. Talk to those around you and share how you are feeling and explain what you need from them. There is a section on disenfranchised grief below.
Find Support:
Connect with support groups or networks specific to your diagnosis. Social media can be a wonderful place for support and finding other people who can resonate (and may be further on in their own diagnosis and therefore able to offer advice).
Always be mindful with information shared on social media - check the source and the background/training of the people sharing educational material. Charities and reputable organisations are a good source for reliable information.
Utilize helplines or counselling services tailored to patients. There can be some available through charity organisations. (See our Sunshine Support services).
Consider talking to a mental health professional. Having a mental health professional support you through the emotional journey can be invaluable.
PRACTICAL SUPPORT
FINANCIAL GUIDANCE
Research potential financial assistance programs, benefits, or grants that may be applicable to your situation. Citizens advice can provide useful information along with Gov.UK.
Contact local charities or organisations for financial advice and support.
If you have income protection insurance, critical healthcare insurance then review your policy. Some life insurance policies will pay out depending on the diagnosis even before you have died, it is always worth checking your options.
WORK & EMPLOYMENT
Understand your rights regarding work, sick leave, and accommodations. Consult your HR department or a legal advisor if needed. Some employers will have an occupational health department which can be a valuable place to have protection and support.
SUPPORT NETWORK
Inform trusted friends and family about your diagnosis and needs.
Designate a primary caregiver o.r support person for help in managing appointments and decisions.
Have conversations with your primary carer/partner when well and explain what you feel would help you during a flare/difficult time. It can often be difficult to articulate our needs when unwell, so having these conversations when well helps reduce the stress.
GRIEF
- The illness is chronic and ongoing, making it hard for others to understand the depth of your experience.
- People around you may not recognize the significance of the emotional impact of your diagnosis.
- Traditional markers of grief, like the loss of a loved one, do not apply, leading to feelings of loneliness and invalidation.
Understanding your emotions
When you’re faced with a life-altering diagnosis or chronic illness, it’s common to experience a range of emotions, including:
1. Loss of Health and Functionality
The diagnosis may mean that you cannot do things you once did, leading to a sense of loss.
2. Loss of Identity
You may feel like a different person than you were before, which can lead to feelings of confusion and sadness.
3. Loss of Future Plans
Chronic illness can alter or derail your life plans, leading to anxiety about what the future holds.
4. Frustration and Anger
You may feel frustrated with your body, the healthcare system, or even with family and friends who may not fully understand what you’re going through.
5. Solitude
Disenfranchised grief can lead to feelings of isolation, especially if friends or family members do not acknowledge your experience or offer support.
NAVIGATING YOUR GRIEF...
Disenfranchised grief occurs when your grief is not openly acknowledged, validated, or supported by others. It is a grief not very well known, but is just as real and very valid. Recognising this is a natural part of the reaction to your diagnosis is the first step to knowing how to get help and work through it.
Acknowledge
1. Acknowledge Your Feelings
Recognise that it’s okay to grieve your losses—big or small. Validate your feelings as a natural response to your situation.
Tip: Take time to reflect on your emotions through journaling or creative expression. Writing can help bring clarity and relief.
Mental Health Support
Therapists or counsellors can provide a safe space to explore your feelings and help you process your grief.
Tip: Look for professionals who specialise in chronic illness or grief to get tailored support.
Practice Self Care
Take care of your physical and mental well-being through practices that nurture and support you.
Physical Activity: If possible, engage in gentle activities like walking or yoga, which can boost your mood.
Mindfulness and Relaxation: Explore mindfulness practices such as meditation, visualisation, or deep-breathing exercises to find moments of peace.
Try to shift your perspective by focusing on what you can still do, rather than what you’ve lost. Set small, achievable goals that give you joy and a sense of accomplishment
Seek Support
Connecting with others who understand what you’re feeling can be healing.
Join Support Groups: Seek out support groups for those with similar diagnoses, either in-person or online. Sharing your experience can help ease feelings of isolation.
Talk to Friends and Family: Share your feelings with those close to you. Sometimes people need guidance on how to support you.
Educate Those Around You
Sometimes, people may not understand what you’re going through. Educating them about your condition and its impact on your life can foster empathy and support.
PALLIATIVE CARE - Does not mean end of life
Palliative care is not solely for imminent end of life care. People are often very afraid if a referral for palliative care is mentioned, when in actual fact people can be under palliative care for years (even over 10 years).
Palliative care is there to help you life as long as possible with as good a quality of life as possible. Engaging with this service (if available) can have profound benefits for quality of life and help with pain control, symptoms and other support.
Palliative care is a service to provide symptom support, help manage your pain, quality of life and provide access to support you may not even realise exists (including wellbeing therapies).
Engage Early
Earlier engagement with palliative care can help you live as long as possible, with fewer symptoms. Getting to know the team helps prepare plans for future changes as well as avoiding symptoms escalating needlessly.
Symptom Support
The palliative care team can liase with your other hospital specialists and provide access to a range of support options, medical treatments, radiotherapy and other services to help manage many symptoms.
This special podcast episode is with our first Voice and original Trustee, Amy W. Amy wanted to be interviewed whilst in a hospice to share how early engagement with palliative care services, and visiting her hospice years before it was needed helped provide control and a positive experience when the end came. Amy faced this stage of her cancer with openness and her interview provides powerful insights into how to regain control, empowerment and joy even in end of life.
Let the Team Get To Know You
Early engagement with the team means they get to know you at your best. They become part of your family and know what your wishes are for a later stage. This means if/when the time comes - they already know what your wishes are.
Hospice
Visiting a hospice when well, long before it is needed can help reduce a lot of anxiety and stress for you and your family. They can be very relaxing environments and always open for people to visit to become familiar with the setting. This can help reduce the fear and anxiety when it is needed at a later time.
FINALLY...
Find inspiration, hope and joy.
It’s important to remember that while the road may be challenging, it can also lead to new paths and unexpected joys. Embrace the opportunity to redefine what living well means for you.
Seek Meaning in Your Experience
Consider exploring how your experience with chronic illness can lead to personal growth, new connections, or a deeper understanding of yourself and others.
Reach Out for Help
If feelings of disenfranchised grief become overwhelming or debilitating, talk to your healthcare team or a mental health professional. You don’t have to navigate this journey alone.
REMEMBER - YOU ARE NOT ALONE
Grieving the changes and losses associated with a life-changing diagnosis is a valid and essential part of your journey. Understanding and acknowledging your feelings is key to healing and finding peace. Remember that disenfranchised grief is a common experience for many people facing chronic illness.
As you move forward, find community, seek support, and give yourself the grace to heal. Embrace each step of your journey with compassion, and know that you are not alone in this experience. You are strong, and your feelings matter.
SUNSHINE SUPPORT
Our SUNSHINE SUPPORT PROGRAMMES are 10 step workshops to help you work through the different stages needed. The Sunshine programme helps you process a life changing diagnosis/finishing treatment. The Sunset programme helps you work through a life limiting diagnosis. The Shadows programme helps those around you effected by a life changing health problem. These workshops can be done on your own at home in your own time, or online with community support.
OTHER RESOURCES TO HELP
SUNRISE PROGRAMME
A 10-step programme to help you start a new chapter; process how a life changing health challenge has impacted who you were so you can figure out how to move forward.
SUNSET PROGRAMME
A 10-step programme to help you process a life limiting health diagnosis. Help you work through the stages of grief, evaluate what is important and how to move forward.
ONLINE COMMUNITY SUPPORT
A range of online community support sessions with different topics for community support.
Help us continue our work
We are an independent charity, reliant on donations and sponsorship...
As a small but rapidly growing charity, our services rely on every penny donated from individuals, fundraising and sponsors. Every donation goes directly to the vital services straight to people who are facing their mortality at a young age.
Make a one of donation, donate regularly, sponsor or organise a fundraiser. Every pound goes directly to where it is needed, any health challenge.