The Grief of Chronic Pain

Unfortunately, grief usually ends up being a part of the chronic pain experience. It’s the grief of things you lost to the pain and the process of moving through life within your new circumstance. As you move through the grief process and gain acceptance of your pain, it can get easier, and you can start to find purpose and identity within your new circumstances.

What is Grief?

Grief is a normal response to loss. Grief is a process of adapting or reconciling to change. It can be a rollercoaster of thought and emotion. Each person has an individual grief response, even if they experience the same loss. The grief process is about integrating the loss into a new life.

Symptoms of Grief

Some of the symptoms of grief include:

• Fatigue /exhaustion/lack of energy /lethargy
• Lack of concentration/confusion
• Memory issues/forgetting stuff you normally wouldn’t
• Emotional rollercoaster – volatility/irritability
• Depression and anxiety, including lack of motivation/interest, changes in appetite, changes in sleep (too little/much), and/or numbness/detachment.
• Physical symptoms: headaches, nausea/upset stomach, restlessness, and/or tightness in chest/throat.
• Existential crisis (Who am I now? What’s important to me now?)

Common Thoughts with Grief

• Why is this happening? I can’t believe this happened.
• When will this ever end?
• This isn’t fair!
• How will I manage?
• What will become of me?
• Who am I now?

Common Feelings with Grief

• Lost/Bewildered
• Confused/Perplexed/Disoriented
• Anger/Irritability/Frustration
• Fear/Despair
• Sadness/sorrow

Our Society Discourages Grief and Mourning

Unfortunately, we live in a grief-adverse society that is often uncomfortable with external expressions of grief. This can be communicated to you in the following comments or ones similar to them:

• Don’t cry.
• Buck up – Stiff upper lip – Be positive!
• Everything happens for a reason.
• Just Grin and Bear it.
• Don’t whine/complain.
• Encouraged to mourn in isolation.
• Choose to be happy.
• You’ll get through it, be strong.
• Aren’t you over it yet?
• Stay busy. Don’t think about it.
• Change your mindset.

These statements tend to be more about how they are uncomfortable with grief, distress, and strong emotions and trying to avoid those things, including in other people.

What Are Some of the Losses with Chronic Pain?

Grief comes from loss. Chronic pain often comes with multiple losses, such as loss of ability, social connections, ease in life, and identity. You may also have other losses along the way.

Loss of Ability

The first loss from chronic pain involves the loss of ability. Chronic pain can take away the things we used to do due to the limitations caused by pain. This can involve the loss of careers, hobbies, and other roles in life. There can be grief around the things you no longer can do.

Loss of Potential

A subset of the loss of ability is the loss of potential. For youth and young adults who develop chronic pain, the losses are often of potential. Where they grieve what could have been and the things that they won’t be able to do in their life due to their chronic pain. Their chronic pain could have them questioning about potential careers, ability to parent well, and potential hobbies and activities.

Loss of Social Connections

The second loss of chronic pain comes from the loss of social connections due to the inability to keep up with the social engagements that you used to do. Social engagements are often one of the first things you drop when chronic pain starts to interfere with your life. We often want to hide our pain and that also can lead to isolating ourselves.

The loss of social connections can be hard because some of these people that we have lost could have been part of the support network that can make your chronic pain journey easier.

Loss of Ease in Life

The third loss is the loss of ease of life. Living with chronic pain is exhausting and distressing. It often requires pacing and planning on how to get the most out of your life with chronic pain. It may mean passing on activities with friends because you can no longer do those activities. You may also feel a loss of control due to the potential of missing planned activities due to flare-ups.

Loss of Identity

The fourth loss is the loss of identity. Living with chronic pain can force you to change your self-identity. If you were athletic and found part of your identity in sports, you may no longer be able to participate in the same sports that were part of your identity. As a mother, you may be limited in some of the activities you used to do with your children. These losses can be difficult to cope with because you feel like you lost a part of yourself. You may have to grieve the old you before you can accept the new you.

What May Be Involved in the Process of Grief with Chronic Pain?

There are multiple phases of grief with chronic pain, these are based off a modified set of stages of grief by Amanda Pratt. Not everyone goes through all the phases of grief with chronic pain and the process is not linear. You may experience jumping between the phases and experience more than one phase simultaneously. You are dealing with grief at the same time as your chronic pain symptoms and this can be especially emotionally and mentally exhausting.

Denial

Denial is something that helps us cope. You may not be ready to face what is before you and denial is a way you are coping with that. While you’re in the denial phase, you may not take the steps you need to, to prevent your condition from getting worse. Some of the things you may find yourself doing include:

• Thinking the pain will resolve itself.
• Pretending that the pain is not happening.
• Trying to do everything you were doing before.

Bargaining, Pleading, and Desperation

Bargaining is the phase of the grieving process in which you fight what has occurred and the circumstances you find yourself in with your chronic pain. It often shows itself in:

• Trying to find some medical magic bullet or some answer that will make it better.
• Asking your doctor for a bunch of tests, searching for a reason for the pain.
• Keep trying new treatments in the hope they will work despite the fact that some of them are unlikely to work.
• Feel desperate for answers for the pain.

This is a phase of trying to bargain and fight with the reality you find yourself in. You may feel guilt or blame and wonder if you did it to yourself.

Anger

Anger is often the stage that starts the healing process. It also can be exhibited as frustration and irritability. The anger can be aimed at:

• The pain and the things lost to the pain.
• The unfairness of your experience.  
• The support system around you, including doctors, caregivers, family and friends.

Anger often comes with the recognition that your life will change.

Anxiety and Depression

Anxiety and depression are a normal part of adjusting to a major life stressor. They may set in as you realize how your life is going to change due to your chronic pain. You may question about what your future is going to look like. You may not know how to deal with all these stressors.

Loss of Self and Confusion

You may struggle with your identity and feel that you lost a part of yourself to the chronic pain. There may have been parts of your identity that you can no longer do due to the pain. You may be confused with who you are and struggle to define what makes you who you are. This is a phase of losing your old self and figuring out who the new you are.

Reevaluating Your Life, Role and Goals

This is the phase of figuring out what your life is about, what your role is, and what are your goals for a life with chronic pain. This can be a trying time of adjusting your life to the limitations of your pain but trying to get the most out of what is important to you. You may be asking questions like:

• Where am I going to go now?
• What is my new normal?
• How am I going to be … (a mother, a professional, etc.)?

Acceptance

Acceptance is the acknowledgement of where you are at this moment. It is recognition that your current circumstances are what they are. You realize that you can’t change the current facts about your chronic pain and how it is affecting you. Acceptance does not mean you like it because you probably don’t like your pain.

Acceptance allows you to come to terms with things that are out of your control and prevents you from becoming stuck in feelings of happiness, bitterness, anger, sadness, and suffering. You can accept something is painful and challenging. It is at this point that you aren’t fighting the pain anymore. You don’t like it, but you accept that it’s a part of your life. This is about learning to integrate your chronic pain into your life.

Acceptance frees up the energy you were using to fight reality and instead refocuses it on coping and taking care of yourself.

What is the Benefit of Moving Through the Grief of Chronic Pain?

Through moving through the grief, you may find yourself moving through a lot of the emotional turmoil that can really increase your suffering with chronic pain. When you are at a place where you are focused on making your life the best it can be with your pain, there are benefits that come with it.

Easier to Self-Manage Your Pain

Once you move through the grief, listening and taking in the strategies and suggestions for self-management is easier. It allows you to focus on yourself, how to get the most out of your life, and the ways to reduce your suffering.

Can Reduce the Tension and Lower Your Suffering

When you stop fighting or resisting the pain and gain acceptance of your situation, your body will hold less tension and that can lessen the pain. At a minimum, it will lessen your suffering.

Turn the Page Towards Purpose

With acceptance of your situation and having a new outlook on your life, your role, and your goals. This allows you to move past what you lost and towards meaning and purpose.

How to Cope with the Grief of Chronic Pain?

Building Your Support Network

Figure out who is part of your support network and talk to your support network about chronic pain, grief, and healing. Connecting with your friends and loved ones can help lift some of your burden with grief and chronic pain.

Learning to Say “No” to People and Things that Don’t Support You Physically or Emotionally

Developing boundaries and learning to say “no” are two of the most important skills for coping with grief and chronic pain. With the amount of energy that dealing with the pain takes out of you, you only have so much energy to invest in the things that are important to you. Grief is also emotionally and mentally draining. When you engage in things that don’t support you, they can be even more draining. This can result in missing out on the things that are important to you and help you maintain a better quality of life.

Engaging in Self-Care

With Chronic Pain, self-care and taking care of yourself is even more important than before you developed pain. When you combine that with grief, it becomes more important to attend to your emotions and stick to a routine.

Engaging in Self-Compassion

How do you communicate with yourself? Is it how you would communicate to a friend or family member going through the same thing? Engaging in self-compassion can bring positive results to how you feel about life.

Self-Compassion (Kristen Neff), includes:

1. Mindful awareness of our suffering
2. A recognition that we are part of a common humanity that is imperfect.
3. A willingness to be kind to ourselves even when we are suffering or feel unsuccessful.

Self-compassion has both a soothing comforting side as well as a side that provides and protects yourself through boundaries and standing strong against things that can harm us. Additionally, self-compassion also can reduce anxiety, depression, stress, rumination, perfectionism, and shame.

Conclusion

Grief is a part of the suffering of chronic pain. The grief of chronic pain has its own unique challenges. It can take years to process the losses and changes to your life due to your chronic pain. There are ways to cope with the grief and take care of yourself.