Living with Illness: Navigating the Emotional Toll of a New Diagnosis.
Receiving a diagnosis for an illness whether it be acute or chronic can feel as though the ground has shifted beneath you. Whether it’s a condition you’ve suspected for some time or a completely unexpected development, the news often brings with it a flood of emotions that can be overwhelming to navigate. In many ways, the diagnosis is just the beginning of a journey—one that affects not only your physical health but also your emotional and mental wellbeing.
I will never forget the day I was told I had advanced adenomyosis. In one sentence with no warning, I was told that it was unlikely I would ever get pregnant, and if I did that it would be highly likely that I would not have a live birth. I felt like the floor fell out from underneath me and I struggled to contain my emotions. I believe that trauma is entwined with experiences such as these when your whole world shifts in an instant. *
The Emotional Rollercoaster of a New Diagnosis
When an illness enters your life, it can stir up a range of emotions that may feel almost impossible to contain. Some people describe a sense of shock, others feel relief in finally having answers, while many experience a deep sadness or fear for the future. This emotional complexity is not unusual—living with illness is often a multifaceted experience, touching every part of life.
Some common emotional responses to a diagnosis include:
Shock and disbelief: After receiving the diagnosis, many people find it hard to process what they’ve been told. The suddenness of it can make the reality feel distant or surreal.
Fear and anxiety: Fear of the unknown is a natural reaction to a diagnosis. What does this mean for your future, your health, and your relationships? These questions can trigger anxiety about what lies ahead.
Grief and loss: Being diagnosed with a chronic illness often brings with it a deep sense of loss. You may mourn the life you had envisioned for yourself or grieve over changes to your body and abilities.
Anger and frustration: It’s not uncommon to feel anger at your body, the healthcare system, or even the world at large. Feeling robbed of your health or future plans can lead to frustration.
Relief: If you’ve spent a long time seeking answers, a diagnosis can bring a sense of relief. You finally know what’s going on, and having a name for it can be the first step towards finding solutions and support.
The Four States of Illness: Rejection, Engulfment, Acceptance, and Enrichment
As you move through life with an illness, you may experience four distinct emotional states: rejection, engulfment, acceptance, and enrichment. These states, while not linear, influence both your physical and mental health.
Rejection is often the initial response to a diagnosis, where the illness is met with disbelief or denial. You may resist the reality of your condition, which can intensify emotional distress, hinder coping mechanisms and limit your adherence to treatments.
Engulfment is when the illness dominates your life, overshadowing other aspects of who you are. In this state, the illness defines your identity, often leading to a sense of hopelessness, depression or anxiety. It can be difficult to move through this state when the majority of your time is dedicated to managing appointments, medications and you are dealing with the daily demands of your illness.
Acceptance brings a shift in mindset, where you begin to integrate the illness into your life without it consuming your entire identity. While the challenges remain, you find ways to manage them and continue to live meaningfully.
Enrichment is when you draw strength and insight from your experience. This state can foster personal growth, where you find new purpose and even a deeper sense of connection to yourself and others.
Each of these states has profound ramifications for your wellbeing. Being aware of these states can help you recognise where you are in your journey and what you may need to move forward.
The Importance of Acknowledging Your Emotions
Acknowledging and accepting your emotional responses is crucial in this early phase. While it’s easy to focus solely on managing physical symptoms, emotional health is equally important. Ignoring your feelings or pushing them aside won’t make them go away; they tend to resurface in more intense ways if not addressed.
If you’re feeling overwhelmed, remember that it’s okay to not have it all figured out. You don’t have to be 'strong' or 'positive' all the time. You are allowed to feel whatever comes up. It can also help at this time to change your language to create space in your experience. Changing from 'I am feeling overwhelmed' to 'a part of me feels overwhelmed' gives you space to be more than just your anxiety, allowing you to observe your emotions with greater clarity and compassion, rather than being consumed by them.
Steps to Support Your Emotional Wellbeing
As you begin to process your diagnosis, here are a few ways you can take care of your emotional health:
1. Give Yourself Time to Grieve
It’s natural to grieve when your life changes in unexpected ways. Whether it's the loss of certain abilities, dreams, or the future you once imagined, permitting yourself to grieve is an important part of the healing process. Allow yourself to feel the sadness or frustration without judgment. It takes time to grow around your grief and if you or your friends and family feel concerned you are stuck in your grief it may be helpful to seek some emotional support.
2. Seek Emotional Support
While this experience may feel incredibly isolating, it’s important to reach out for support. This could be from loved ones, online communities of people going through similar experiences, or a therapist who understands chronic illness. You don’t have to carry this emotional burden alone.
A compassionate therapist can help you process your emotions in a safe space, offering guidance and support tailored to your experience. Whether it’s fear, grief, or anger, having someone who truly understands can make a world of difference.
3. Educate Yourself at Your Own Pace
Learning about your condition can be empowering, but it’s also okay to take it slow. Some people want to dive right into researching their illness, while others feel more overwhelmed by the information. Take it one step at a time, and remember that you don’t need to become an expert overnight.
Knowledge can provide a sense of control, but it’s equally important not to let it consume you. Balance learning with self-care and time away from thinking about the illness.
4. Practise Self-Compassion
During this time, you may find yourself feeling frustrated or angry at your body, especially if it isn’t able to do the things it once could. Practising self-compassion means recognising that you are not to blame for your illness, and that you deserve care and kindness.
Instead of focusing on what your body can’t do, try to appreciate what it’s still capable of or what it has survived. Treat yourself with the same compassion you would extend to a loved one in a similar situation. To learn more about self-compassion click here.
5. Create New Routines and Boundaries
As your health changes, your lifestyle may need to shift, too. It’s important to set realistic boundaries to protect your physical and emotional energy. This might mean saying no to certain commitments or adjusting your work-life balance.
Creating new routines can also help you regain a sense of control. Whether it’s incorporating regular self-care activities, gentle movement practices, or mindful moments into your day, having structure can provide some emotional stability during a time of uncertainty.
Navigating the Long Term
Living with a chronic condition means adjusting not only in the short term but over the long haul. There will be ups and downs, good days and bad days. The key is to approach this journey with flexibility and self-compassion.
It’s also important to remember that your emotional response to your diagnosis may evolve. As you adjust to living with illness, some of the initial shock may subside and you may grow around your grief, but new challenges may arise. Staying connected to your emotions, reaching out for help, and finding support will continue to be vital as you navigate your new reality.
You’re Not Alone
Receiving a new diagnosis can feel like an isolating experience, but you’re not alone. Whilst no two experiences are the same, many others are navigating this same uncertain path, facing challenging emotional hurdles. By acknowledging your emotions and seeking support, you can begin to move through the initial toll of a diagnosis and towards a more balanced and empowered life.
If you're struggling to cope with your diagnosis or need someone to talk to, know that support is available. Whether it's through therapy, support groups, or connecting with others living with chronic illness, there are people who understand what you're going through and can offer compassionate guidance.