Life changing diagnosis
A Toolkit To Regain Control...
Receiving a life-changing diagnosis or dealing with a chronic illness can be an overwhelming experience. Receiving a new major diagnosis can be daunting and life-changing. While many people understand the concept of grief after a loss, the grief associated with chronic illness is often less recognized and can feel isolating. This toolkit provides essential information and resources to help patients and their families navigate this challenging time.
Understanding 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.
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Questions to Ask Your Doctor:
- What exactly is my diagnosis?
- What are the treatment options available?
- What are the potential risks and benefits of these treatments?
- What lifestyle changes should I consider?
Emotional Support
Acknowledge Your Feelings: It’s normal to experience a range of emotions such as fear, anger, confusion, or 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.
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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 counseling services tailored to patients.
- Consider talking to a mental health professional.
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 and Employment Rights:
- 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.
Build a 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.
TREATMENT OPTIONS
Understanding Treatment Plans:
- Discuss various treatment approaches (medications, therapy, lifestyle changes, surgeries, etc.) with healthcare providers.
- Consider getting a second opinion if you don't feel comfortable with what is being presented. Patients can not demand treatment, however they are allowed to ask for a second opinion, or request where to receive treatment. Sometimes treatment options vary between Trusts, do your own research to see what is available.
-Make sure you understand the purpose of treatment; is it to cure? Is it to manage/stabilise symptoms? Is treatment aimed at providing as long as possible without intending to cure?
-What is your current aim? Depending on age, fertility may need discussing early on during treatment discussions. Exploring whether fertility preserving measures can be taken, or whether treatment allows for fertility to be considered at a later date. If in doubt, ask the questions.
Keep a Health Journal:
- Document appointments, medications, side effects, questions, and any other relevant information for future reference.
- If you leave your appointment and have further questions, most specialists will have a specialist nurse. They can be a good point of contact and more accessible by phone or email throughout the week without an appointment. You can contact them to ask follow-up questions and whilst they may not be able to respond right away, they can return to you having checked your notes and discussing with your consultant.
LIFESTYLE ADJUSTMENTS
Managing side effects and symptoms
Palliative Care
Nutrition and Exercise:
- Explore dietary options that may aid in recovery or management of your condition. Consulting a nutritionist could be beneficial.
- Discuss suitable exercise regimens with your healthcare provider.
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Recognise Commons Symptoms:
- Understand potential side effects related to your diagnosis or treatment and learn coping strategies.
- Become familiar with what your 'new normal' is, again it is important to know what is expected and what isn't. 1 in 2 people with a chronic health condition will develop other health conditions and it is important to not presume everything is down to the one diagnosis.
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Palliative care is not solely for imminent end of life care.
- 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.
DISENFRANCHISED GRIEF
Disenfranchised grief occurs when your grief is not openly acknowledged, validated, or supported by others. This can happen when:
- 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
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.
2. 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.
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-Talk to Friends and Family: Share your feelings with those close to you. Sometimes people need guidance on how to support you.
3. Educate Others
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.
4. Find a Mental Health Professional
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.
5. 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.
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- Mindfulness and Relaxation: Explore mindfulness practices such as meditation, visualisation, or deep-breathing exercises to find moments of peace.
- Nutrition: Eat nourishing foods that support your health and well-being.
6. Create a New Narrative
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.
FIND HOPE
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.
CONCLUSION:
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.
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