Everyone responds differently to a life changing diagnosis and every situation is unique. Many diagnoses and events seem to come out of nowhere, leaving us, and our loved ones reeling.
While there is no way to prepare for a life changing diagnosis or event, and often little we can do to mitigate the initial shock, Today we’ll be exploring what we can do to support ourselves, and our immediate circle.You may have your own definition of what a life changing diagnosis might be, but I’ll offer up a definition…
A life-changing diagnosis refers to a diagnosis that can have a significant impact on a person’s life. It can be a chronic illness, a disease from which you eventually recover, or something that you live with throughout the rest of your life. While it may not be the path you’d envisioned, a life-changing diagnosis doesn’t mean you cannot continue to lead a happy and fulfilling life.
Some examples of life changing diagnoses are, but of course not limited to:
Cancer, diabetes, HIV, hepatitis C, arthritis, coronary heart disease, Chronic Obstructive Pulmonary Disease, Chronic Fatigue Syndrome, multiple sclerosis and chronic pain for example.
Anyone, at any time in life, could receive a life changing diagnosis.
Given that on average one person every 90 seconds finds out about their cancer in the UK, and there are 390,000 newly diagnosed people every year[1]. We can see that considering all the potential life changing diagnoses possible, at any given time, will be high. And we can expect to at some point in ours, or our loved ones lives, to be impacted by a life changing diagnosis.
It is a natural human tendency to live life rarely thinking about our health or mortality.
And why should we, until something life-changing happens, such as being diagnosed with a chronic health problem and suddenly, you are hyper-aware that no life is without its limits.
Getting a diagnosis and living with a life changing diagnosis affects everyone differently. This can involve a whole range of complex emotions and feelings. These can also fluctuate and change over time.
Some people go through a range of emotions, from feeling overwhelmed to feeling relieved. May be feeling guilt, shame, fear, grief, denial, bargaining, anger, sadness, envy, jealousy, frustration or confusion.
Some people describe this as an ‘emotional rollercoaster’. Accepting the reality one day and angry the next. It may help to remind yourself that these feelings are normal, and will likely ease with time.
Not only does the life changing diagnosis impact on your emotional experience – it is likely to also have an impact on your psychological, physical, social and financial wellbeing too. And it’s not just the people receiving the diagnosis that can be impacted.
First and foremost, giving yourself and others permission to feel. Bottling up emotions or trying to present a brave face may seem like the natural thing to do, but it could be detrimental in the long run. Whatever your diagnosis, it’s vital to let your feelings flow freely. It’s all part of processing this new information and experience.
The Change Curve is based on a model originally developed in the 1960s by Elisabeth Kubler-Ross, it has been widely used as a method of helping people understand their reactions to significant change or upheaval.
The original change curve had five stages – denial, anger, bargaining, depression and acceptance and this has been adapted over the years. There are numerous versions of this curve in existence now. However, the majority of them are consistent in their use of the following basic emotions, which are often grouped into three distinct transitional stages.
Stage 1 – Shock and denial. The first reaction to change is usually shock. The shock is often due to: lack of information or fear of the unknown. After the initial shock has passed, it is common for individuals to experience denial. At this point focus tends to remain in the past. There’s likely to be a feeling that as everything was OK as it was, why does there need to be a change?
Stage 2 – Anger and depression. After the feelings of shock and denial, anger is often the next stage. The lowest point of the curve comes when the anger begins to wear off and the realisation that the change is genuine hits. Feelings during this stage can be hard to express, and depression is possible as the impact of what has been lost is acknowledged. This period can be associated with: apathy, isolation and remoteness.
Stage 3 – Acceptance and integration. After the darker emotions of the second stage, a more optimistic and enthusiastic mood begins to emerge. Individuals accept that change is inevitable, and begin to work with the changes rather than against them. The final steps involve integration. The focus is firmly on the future and there is a sense that real progress can now be made. By the time this stage is reached, the changed situation has firmly replaced the original and becomes the new reality. The primary feelings now include: acceptance and hope.
It’s important to note each person reacts individually to change, and not all will experience every phase. Some people may spend a lot of time in stages 1 and 2, whilst others who are more accustomed to change may move fairly swiftly into stage 3. Although it is generally acknowledged that moving from stage 1 through stage 2 and finally to stage 3 is most common, there is no right or wrong sequence. Several people going through the same change at the same time are likely to travel at their own speed, and will reach each stage at different times.
Let’s start to consider what you can do to support yourself whilst living with a life changing diagnosis.
The most crucial part of coming to terms with the diagnosis is to learn to LIKE yourself as a person with your condition. It is important to come to terms with the fact that this diagnosis is now a part of your identity, even if it’s for the short-term.
It is invaluable to learn to ‘like’ your life even if it includes the ups and downs of managing your condition.
Here are four steps to help you LIKE yourself – learn, inquire, kindness, express emotion
- Learn all you can. Obtain information from your healthcare team, borrow some books from the library, join a support group or a forum and learn from others who have been through what you are experiencing and can offer you their ‘expertise by experience’. Make sure you’re using credible sources – we’ve got some slides at the end of the session to point you in the right direction.
- Be informed but avoid becoming obsessed. Knowledge is power. Being informed about your diagnosis can help you make meaningful decisions about your treatments and understand potential future changes. Speak to your medical team, ask questions, and research reputable sources. Open communication with your healthcare provider is crucial in managing your condition. Be honest about your concerns, ask questions, and discuss your treatment options. If your healthcare provider is unable or unwilling to listen, find one that will support you.
- Show yourself some kindness and go easy on yourself. How might you treat someone going through a tough time? You’d give them a break. It’s easy for us to give kindness to others, may be less easy for ourselves. Transitions take time. Don’t expect too much of yourself and others as you adapt to new circumstances. Recognise small achievements and progress.
- Many of us feel we need to be ‘strong’ and keep our emotions about our diagnosis hidden. However, it is actually a healthier and therefore stronger response, to be able to express some of the (very natural) emotions you will be experiencing at this time. You don’t have to face this alone. Can you talk to a trusted friend? Reach out to your loved ones; they can provide emotional support, a comforting presence, or practical help. Sharing your feelings and fears with them can lighten your emotional load. If you feel that your close circle may not understand, considering joining a support group can also be exceptionally beneficial.
People are often tempted to use alcohol, cigarettes or other substances to manage and dull the overwhelming emotions they are experiencing, in an attempt to distance themselves from the painful reality they are living.
These substances are indeed shortcuts to feeling better in the short term. It is therefore very likely that you might feel a greater desire to use them in the midst of having to cope with a whole new range of feelings and all of the practical challenges that accompany the condition.
However, you know that using these coping mechanisms for anything other than the very short term is not ideal. Yes, they mask the root problem – but the root problem is still there.
Firstly, the practical things, which may seem common sense, but adjusting your habits and schedule to include the practical things can take some time and effort.
- Taking your medicines as prescribed. Taking the right dose at the right time and in the right way is essential for navigating your condition as best as possible. One tip for helping you remember to take your medication is “if-then” plans. So if X happens (the event), then I’ll do Y (my action). When I put the kettle on, I’ll take my medication.
- Monitor your health at home. Some treatment plans include checking your blood sugar, blood pressure, or other health numbers on a regular basis. Be sure to stay on schedule and reach out to your doctor if anything looks wrong. Let your health care team know about new or worsening symptoms or other changes that concern you.
- Schedule regular checkups with your doctor or healthcare team. It’s important to schedule regular appointments to make sure your treatment plan is working. Talk with your doctor to decide how often you should be going in for checkups.
Now onto a variety of tools and tips you can use to help you navigate the challenges you and others may face. It’s important to note I’m going to be covering a number of different options and approaches, the aim of this section is to give you may be one or two ideas you’d like to go away and explore – we all have different preferences and needs – keep an open mind and gentle curiosity as we go through these strategies.
- Consider and take stock of your strengths. Leverage your strengths to boost wellbeing. For example, if creativity is a strength, find some new creative pursuits; if it is social intelligence, find ways to bring people together virtually. If you’re unsure of your strengths, there is a free strengths survey available online – VIA strengths survey – www.viacharacter.org
- Work with your personality. How do you prefer to do things? Are you spontaneous or structured? Prefer time with others or alone? Organise yourself accordingly. Plan routines and social interaction according to your needs.
- Focus on the basics. Prioritise sleep, diet, relaxation and exercise. Without a doubt, your physical health is crucial – within your body’s limits. These steps will not only strengthen your body to better handle the diagnosis and treatment but also have a positive impact on your mental health and wellbeing.
- Try to focus on what you can control rather than what you can’t. It may help to focus on one day at a time rather than looking too far into the future.
- Set boundaries. As home/work/school environments merge, think about boundaries between them. Rules and structures can be useful e.g. I will look at my emails between 7 and 9am.
- Gratitude. Try to appreciate what you have, and look for the good in every day.
- Find time for activities that bring you peace and joy. Whether it’s reading, listening to music, meditating, or taking a stroll in nature, these activities can help you relax and take your mind off your diagnosis, even if it’s only for a short while.
- Living with a life changing diagnosis can bring a lot of changes to a person’s life. Working on a goal can have a positive impact, providing a focus and making you feel more confident and in control. It’s not always necessary to stop doing things after a diagnosis; it might be you need to find different ways of doing them. Start small. Take time to think about how you want to live. Consider any obstacles standing in the way. Set specific, achievable goals to start working toward meaningful change in your life. Enlist loved ones or friends to help you.
- As you determine and master smaller, individual goals, reward yourself for your commitment. Continue to build off of your achievements. Perhaps give yourself rewards – something special to enjoy or do.
- Meditation and mindfulness. Mindfulness practices such as meditation or yoga can help you stay present and calm, even in the face of difficult emotions. Mindfulness, the act of focusing on the present moment, with intention and without judgement, can help reduce anxiety and stress. It can be as simple as concentrating on your breath, paying attention to the feel of the sun on your skin, or savouring the taste of your cup of tea.
- Listening to music. This works best if you can avoid being distracted. Try dimming the lights. Sounds of nature (ocean, birds, waterfalls) can also be soothing.
- Reflect on what’s important. Finding meaning and purpose can enable us to flourish. Seek out activities or hobbies that bring you joy and fulfilment. Engaging in meaningful activities can help you maintain a sense of purpose and a positive outlook on life. It could be continuing with things you already do, things you may have done before, or trying something brand new to you.
Integrating past, present and future: timeline tool
Chances are, at some point in your life, you’ve had to navigate change, uncertainty and tolerating ambiguity.
A timeline tool can be used to identify three things; the evidence of times you have overcome difficulties in the past, what skills you have learnt from these experiences and lastly, what this suggests about you as a person.
All it requires is drawing a line, or just making a list if you prefer and starting from now and going back in your past (as far as you want to go), it might be in the last week, month, year or more and identify times of adversity and answer those three questions.
- When have you overcome difficulties in the past?: studying part time whilst working full time
- What skills have you learnt from this experience?: perseverance. Solution finding. Flexibility.
- What does that say about you? I am successful. I am strong willed. I am realistic. I am intelligent.
You’ll see some other examples here on the slide. Give this technique a try to help increase your self-confidence and self-efficacy in being able to cope with a challenge or change in life.
Resilience Building Blocks
Imagine you could detail a chart or list that outlined all your assets, resources, skills or knowledge – those things that could support you when the going gets a little tougher. A visual prompt that acts as a reminder of what you could lean into if you needed it. That’s what this tool is all about. The aim is to establish a sense of resourcefulness to support you to cope with difficult situations.
I’d encourage you to give this a go for yourself when you have the time, you could start now. I have mine on post it notes, so I can continue to move them around and add to them over time.
You’ll begin by writing down your key assets and resources in relation to your social network, your skills, knowledge and any practical / personal resources.
And think about the following questions.
- What are the key accomplishments and assets in the areas of your social support, skills, knowledge and any other resources?
- How can you draw on these to support you during the current situation you are experiencing?
- Drawing on past experiences of challenge and adversity, what have you found to be the most helpful skills, knowledge, assets and resources to support you?
- If your best friend, family or close work colleague were helping complete this activity, what information would they add in?
- Are there any areas where you could build further upon your skills, knowledge, assets and resources? If so, how?
Moving on now to supportive networks and relationships now
Being able to speak openly about the way you are feeling and, in turn, listening to others can strengthen relationships, and help to protect your mental wellbeing.
Effective support networks – communication
Communication is key to well-being for people living with a life changing diagnosis, their family, partners or carers. Finding someone you can each talk about how you’re feeling is vital. It can also be the first step in building community and outside support.
Family and friends, community or spiritual groups, and even people who share a hobby can be potential sources of assistance and support.
You may find that other people in your life may not understand what you are going through. Good communication can help you to explain your feelings and needs. Here are some tips for improving communication:
Choose assertive communication: Be direct in talking about your personal rights and feelings. Talk about both positive and challenging topics in a respectful and open way and ask that others do the same with you.
Use exact language. Be specific when discussing your feelings. Avoid using generalisations such as words like “always” or “never.”
Know when the time is right for certain discussions: Make sure you have enough time to talk about important topics. Wait until you have everyone’s undivided attention. You may have to delay your chat or finish it later.
Be a good listener: Active listening means letting others know they’re heard. For example, maintaining eye contact, not interrupting, and repeating back what the person said are helpful in making sure you truly understand what someone is saying. This type of listening is very important when talking about difficult topics.
Don’t join in the “shame and blame game”: Some people may feel guilt or shame about their condition. Blaming yourself or others is not helpful. Rather than focusing on the past and what might have caused your condition or what you could have done differently, shift your focus to the future. This change can help you live your life based on what matters most to you now. What are your hopes for your condition? What are some goals you’d like to work toward?
Effective support networks – building your network
Research shows that having a good support network can help to build resilience. Support from people you trust can make stressful situations easier to manage.
I’ve got a few questions you can use to explore your current support network and see if there is a gap in your network that you might want to look to build upon
- Who do you confide in?
- Who do you go to for advice or information?
- Who do you talk to without fear of being judged?
- Who do you let your hair down with from time to time?
- Who do you know will be up for a laugh?
- Who do you go to for emotional support?
- Who do you take a risk with?
- Who do you trust 100%?
- Are you relying on the same person / people for many types of support?
- Are you better connected inside work or outside work or inside or outside your family or friend network?
- Are there any gaps? If so, how might you fill them?
- What types of support do you find it easy / difficult to ask for? What might make it easier?
- What is the smallest thing you could do to strengthen your social support network?
Living with a life changing diagnosis is not easy and while it can be difficult to navigate, the right support can make a significant difference. By taking care of your health and wellbeing, seeking support, and staying informed, you can manage the impact of your condition and maintain a positive outlook on life.
Each Coaching Psychology relationship I have is unique and tailored to your specific needs, goals, and circumstances. As a Coaching Psychologist I spend time preparing for sessions, reflecting on previous sessions and exploring how I may work with you at every stage of our Coaching Psychology journey together.
For every person I work with, I will adapt my methods, tools, and techniques based on your personality, strengths, challenges, and aspirations. The flexibility of Coaching Psychology ensures that it meets the diverse needs of clients rather than following a rigid, one-size-fits-all approach.
If you’d like to know more about me and how I work, please see my about me page here:
https://empoweryoupsychologicalservices.co.uk/team-member/emma-mudge/
You can now book a free no-obligation 15 minute Exploratory Call with Emily or Emma via our Book Now button! You can use this to explore whether CBT or Coaching Psychology is a good fit for you.
And if you’d like to book to work with me using Coaching Psychology, starting with a 90-minute initial session, please click here: https://empoweryoupsychologicalservices.janeapp.co.uk/
Emma Mudge
Co-founder and Coaching Psychologist
BSc (Hons), PGCert, PGDip, MSt
Member of the British Psychological Society
& Division of Coaching Psychology – GMBPsS
EmPower You Psychological Services