Do you ever feel like you’re stuck thinking about life before your chronic illness was diagnosed? Like no matter how hard you try, your mind drifts back to easier times before your chronic illness was diagnosed? This is a sign that you’re experiencing Chronic Illness Grief.
Below are the symptoms of grief, along with insights I have learned as a chronic illness therapist helping clients process their feelings around learning how to live with their illness. I hope they help you on your journey as you adjust to life with a chronic condition.
What is Chronic Illness Grief?
The Seven Stages of Chronic Illness Grief, adapted from the initial Five Stages of Grief by Elizabeth Kubler-Ross, highlight the psychological and emotional challenges you experience when facing the reality that your life is changing as a result of your illness.
The Seven Stages of Chronic Illness Grief include:
- Denial and Shock. This happens when you’re newly diagnosed and/or experiencing new symptoms. Your thinking and behavior are riddled with disbelief.
- Pleading, Bargaining and Desperation. Naturally occurring next are feelings of guilt and shame. You may find yourself thinking back to before symptoms started. Or you may desperately want to make your symptoms go away. In this stage, you may find yourself asking often, “What could I have done differently?” Or, “What can I do to make this stop/go away?”
- Anger. Feelings of anger with yourself, your body and life in general are normal in this stage. You may have difficulty coping with what’s out of your control relating to your health and that may leave you feeling out of control inside.
- Depression and Anxiety. Worries about how your chronic illness will affect your life are common in this stage. Feelings of loss and helpless about how things have turned out or deep worries about the future may flood your thinking at this time.
- Loss of Self and Confusion. In this stage, you may feel like you no longer recognizing yourself or parts of your life as you adjust to life with your chronic illness. Asking “Who am I now?” is a common question at this stage of your grief and loss.
- Re-evaluation of Your Life, Roles and Goals. At this time in the stages, you may find yourself focusing on moving forward with your health condition. You have a greater understanding of your physical symptoms and you work on redefining your identity and how you approach your life/aspirations.
- Acceptance. Finally, you’re at the place of acknowledging your current reality with a chronic illness. You’re open to exploring what it means for the rest of your life and how to make the best of your life using new strategies and supports.
The stages are fluid and change depending on the day and what’s occurring in your life. However, the goal is to reach a level of acceptance with your chronic illness so you can live a life in less mental angst about your condition. Acceptance is the stage that supports you in building a meaningful life in spite of your chronic health condition.
Grieving Your Life Before Your Chronic Health Condition
Life with a chronic health condition is full of moments that take your mind and body back to the past, making you wish things would go back to “normal.” These moments are called chronic illness grief reminders, because they remind you of what changed with your health condition.
These reminders happen when you are doing typical, unassuming things (i.e., hygiene activities, making plans, eating a meal, having a conversation, working, completing school work, spending time with loved ones, etc). The stress from realizing that these activities are not so “normal” for you anymore can begin to take a toll on your mental health as the grieving process continues.
Chronic illness grief memories take your mind back to moments when you:
- Had more friends or spent more time with them
- Felt more energetic to do things you enjoyed or wanted to accomplish
- Lived with less restrictions (food and abilities)
- Made spontaneous decisions without thinking several steps ahead about your health
- Didn’t need to explain your health to anyone in order to feel seen
- Felt like you fit in with other people
- Didn’t have to cover up or mask how you really felt
- Spent more time out of the house doing fun things
- Only needed to schedule annual medical appointments
- Didn’t need to make adjustments to get “simple” or “normal” things done
- Traveled and took vacations
- Worked towards a career your loved
- Dated without worrying about rejection once they learned about your chronic illness
- Had enjoyable sex without aches, pains and adverse symptoms
- Felt confident in your body
It’s admittedly painful to be reminded of how things used to be. It can make you start to feel bad for yourself, but how you respond to yourself when these memories come up is important.
A major chronic illness adjustment is to understand that parts of your life will change after diagnosis (temporarily or permanently). There’s nothing wrong with noticing the changes that have happened, but staying stuck in the past makes it much harder to take care of your needs for today.
As a chronically ill therapist, I’ve found that it’s most helpful to honor your past with compassion and grace while grieving the current moment with curiosity. When I work with clients I encourage them to explore their new reality without judgment, making it possible to move forward.
Here are a few tendencies that make that progress more difficult.
Trying to “Fix” Your Health After Diagnosed
It’s not uncommon to feel that you need to “fix” your health in order to get back to how things used to be. Common statements that come up are,“This would have never happened if I had done xyz,” “I need to do more of xyz so that this can go away.”
You may also find yourself becoming your own personal health expert by constantly reading articles, books and watching videos about how to take care of yourself during a chronic pain or illness flare.
Informing yourself on how to care for yourself is great, but consider how much of your time each day is devoted to it. These habits can make your inner critic much louder and overwhelming, leading you to feel “broken,” and increasing your feelings of worry, fear and self-judgment if you’re not careful. Blaming and criticizing yourself is one of many things to avoid after being diagnosed with a health condition, because it only has the power to make your grief process more painful and harder to deal with.
So as a gentle reminder: You do not need to be “fixed,” and you are not “broken.” Instead, you are someone who needs more time to adjust to your “new norm” as you continue to adjust to life with a chronic health condition. Instead of focusing on fixing yourself, the most self-compassionate priority is for you to make the best of your current moments.
Here are some ways to get started.
Feeling Depressed When Reminded of Your Limitations
There’s so much loss that’s tied to having a chronic health condition, and it’s understandable that those losses make you feel down and depressed. But when you notice your limitations when trying to do things of importance to you, the grief and depression can return unexpectedly.
As a chronic illness therapist, I often hear stories from clients that they feel stuck in a dark place with most thoughts making them feel worse. Questioning your value as a person and feeling bad about yourself only gets stronger the more you do it. And subsequently, your energy and motivation to move forward starts to drop.
This is a vicious cycle to be in, and many find it hard to bounce back from it. One major reason is because your feelings of sadness about what has changed are real. It’s really hard coming to terms with not being able to respond as you did in the past.
So, I’m not telling you to ignore those feelings or only focus on the positive things, because those parts of you need room to be heard as you grieve. However, one of the most important things to do after being diagnosed with a chronic illness is to consider supportive ways you can cope with those feelings so that you can move forward.
Feeling Angry with Your Body as a Grief Response
Truthfully, anger is the most commonly experienced emotion when grieving as you face disappointments about your health and how it impacts your life. There’s much out of your control that’s happening and that in itself is really frustrating.
Here are some common signs of anger:
- Muscle tension
- Heart palpitations
- Racing thoughts about the problem
- Irritable mood (more snappy, raising your voice, short-tempered)
- Mind goes blank
- Insulting others
- Blaming yourself (inner critic)
- Feeling sick to your stomach
- Feeling hot
- Going quiet and “shutting down”
- Heavy or fast breathing
- Becoming argumentative
- Scowl or angry face
Expressing Anger Towards Yourself and Your Body
The relationship that you have with your chronically ill body is likely to change at any given time.
A common source of anger is needing to cancel plans, slow down, or take time to recover during a chronic illness flare. Many people see their body as their enemy in these moments, feeling that it’s working against them.
But how do you respond in these situations?
Are you comparing yourself today to who you were before your illness? Do you still hold yourself to the same standards despite having more limitations or challenges with your health?
Theodore Roosevelt once said, “Comparison is the thief of joy.” This is absolutely true when comparing yourself with who you were before your health diagnosis.
Holding yourself to expectations of the past makes life harder for you. You end up feeling angry with yourself, focusing mainly on the problems in your life, feeling more ill or stressed, and needing more time to recover. It can also lead to mental health conditions that make your good days harder to access.
That’s not fair to you. You deserve to experience moments of joy and meaning in your life while you also grieve how your health condition has changed your life. Adjusting your expectations can help you do that.
I personally know how hard it is to change so much about how you handle things, and it can make you feel like you’re literally having an identity crisis. But once you embrace what parts of your life (and your health) are out of your control, you can start directing your energy and attention to those things that can enhance your life. This is how you know you’re transitioning to Chronic Illness Grief Stages 6 (Re-evaluation of Life, Roles and Goals) and 7(Acceptance).
How to Manage Your Anger as You Grieve Your Past
You have every right to feel angry as you adjust to your new norm with a chronic illness. However, you will be most effective in managing your anger when you are more aware of how it impacts your body.
In the anger stage of your grief, consider how you can respond to yourself in a compassionate way instead of trying to convince yourself that the anger is a bad thing.
Deep breathing helps to soothe your nervous system and is a compassionate response to anger. Try practicing deep breathing at least once daily for 2-5 minutes to give your body a gentle reset. Here are some other ways to keep your mood steady with a chronic illness.
Claiming Your Past as Part of Your Grief Story
So how can you move forward while grieving how things used to be before your chronic illness? Take some time to honor your past as a chapter of your story, recognizing the story is not complete yet. Your past is full of moments that your chronic illness grief makes hard to experience.
Here are some fulfilling ways to connect with your past:
- Write your story from the beginning to right now, noticing several different moments that grief sometimes makes it hard to remember.
- Write a letter to yourself from the past.
- Make a gratitude list of things you are grateful to have done in your past (including the day before).
- Make a photo album of meaningful moments from your past that bring on positive emotions (i.e., joy, excitement, love, adventure, accomplishment). These photos can be a source of joy for moments when you are heading into a dark place or could use encouragement.
Remember, being reminded of how things were in the past can bring on both feelings of pain and fulfillment. The painful thoughts and feelings may come first for a while (and that’s okay). Just keep practicing self-soothing strategies and observing the other grief emotions as well. It can get easier over time and help you focus on how to find the meaning of today.
You can do this. Take it a day at a time.
Next Steps for Chronic Illness Grief Support
As a chronic illness therapist, I help individuals and families manage the life changes that come with chronic health and pain conditions. Therapy is a powerful tool that can help you talk through your health grief and all that has changed with support. Although your journey with a chronic illness can be hard, therapy makes it more bearable through teaching you new skills and helping you sort the hard things out, giving you more confidence and improving your mental health.
Find a therapist who works with chronic illnesses and grief. Ideally, they offer support groups as well as individual therapy to help you sort through how you want to approach your health and wellness. If you’re looking for someone, I would be happy to speak to you. You can schedule your first appointment with me by booking a free 15-minute consultation call.