From Pain to Purpose: Navigating the Grief of Chronic Illness

Life as we know it can change in an instant, particularly when faced with a diagnosis of chronic illness. A diagnosis that turns your world upside down and challenges everything you once knew about yourself and your future. Chronic illness doesn’t just affect the body; it profoundly affects the heart, soul, and spirit. The grief that accompanies it is deep and ongoing, often taking many by surprise. We have been talking about the different types of grief. They are not just something associated with death. Chronic illness brings its own kind of loss.

This blog will explore the stages of grief in the context of chronic illness, what it means to become your own advocate, and how helping others can be a powerful tool for healing. Throughout, we’ll lean on God’s Word for comfort, understanding, and strength in navigating this challenging journey.

The Hidden Grief of Chronic Illness

When chronic illness enters your life, the losses can feel invisible but weighty. There's the loss of health, certainty, dreams, and sometimes even relationships. I know my relationships were taxed as my body was not functioning as it should. My physical pain clouded my ability to function emotionally. As with any loss, grief follows in stages, though not necessarily in a linear fashion. In her groundbreaking work on grief, Elisabeth Kübler-Ross outlined five stages of grief: denial, anger, bargaining, depression, and acceptance. These stages are often used to describe the emotional journey of those mourning a loved one, but they also offer insight into the complex emotions associated with chronic illness.

Stage 1: Denial

The first stage is denial—often a shield we use to protect ourselves from the full impact of the diagnosis. When you hear the words "chronic illness," the weight of that can feel unbearable. You might find yourself thinking, “This can’t be happening,” or, “Maybe the doctors are wrong.” It’s an understandable reaction. One of the doctors I worked with was very thorough. He ran tests I didn’t know existed. When he came to review the results, he let me know that it was not MS and not lupus. The heartbreaking announcement was he didn’t know what it was. I was stunned. I could not hear anything else that he said because I could not shake the feeling of “this can’t be happening.” Denial gives us space to slowly absorb reality without being overwhelmed all at once.

Biblical Insight: In this stage, we can be reminded of the story of Job, who faced unimaginable loss and suffering. Despite his pain, Job initially refused to accept his circumstances (Job 2:10). Yet, through it all, God remained faithful. Even in our moments of denial, God is present, ready to walk with us through the next stages. Psalm 34:18 assures us that “The Lord is near to the brokenhearted and saves the crushed in spirit.”

Stage 2: Anger

As denial begins to wane, anger often rises. This anger may be directed at yourself, your body, doctors, or even God. You might ask, “Why me?” or “Why now?” Anger is a natural response to feeling like life has betrayed you. It’s a reaction to the loss of control and the injustice of suffering from something you didn’t choose. Another doctor along the way challenged me to accept the fact that I would be in a wheelchair in six months. My outburst towards him was loud, harsh, but honest.

Biblical Insight: The Bible tells us of those who also felt anger in their suffering. In Psalm 13, David cries out, “How long, Lord? Will you forget me forever?” David's raw honesty reminds us that anger, even directed at God, is part of the human experience. The key is not to stay there. God invites us to bring our anger to Him, as He can handle our deepest emotions. “Cast all your anxiety on Him because He cares for you” (1 Peter 5:7).

Stage 3: Bargaining

In the bargaining stage, you may find yourself making deals—whether with God, yourself, or your doctors. “If I do this treatment, then maybe I’ll get better.” “God, if You heal me, I promise to live differently.” This stage is marked by the longing for a way out, hoping that something or someone can reverse the diagnosis.

Biblical Insight: Even Jesus, in His humanity, engaged in a form of bargaining in the Garden of Gethsemane. He prayed, “Father, if You are willing, take this cup from Me; yet not My will, but Yours be done” (Luke 22:42). Jesus’ example shows us that while it's natural to ask for a way out, true peace comes from surrendering to God's will. It’s about trusting that even in our pain, God is working for our good (Romans 8:28).

Stage 4: Depression

Depression is the stage where the reality of the illness and its implications begin to sink in. The losses are felt deeply—the loss of health, the future you envisioned, and perhaps even the loss of relationships as people around you struggle to understand your pain. It’s a stage filled with sadness, isolation, and often a sense of hopelessness.

Biblical Insight: The Bible is rich with examples of people who struggled with deep sorrow. In Lamentations 3:19-24, we hear the anguish of Jeremiah: “I remember my affliction and my wandering… and my soul is downcast within me.” But in the same breath, Jeremiah remembers God’s faithfulness: “Yet this I call to mind and therefore I have hope: Because of the Lord’s great love, we are not consumed.” Even in our darkest moments, God’s love remains steadfast. He is our refuge, and He will never abandon us.

Stage 5: Acceptance

Acceptance is not about being okay with the illness or its impact, but rather coming to terms with the new reality. It’s about finding a way to live a fulfilling life despite the limitations and uncertainties. Acceptance can bring peace, but it’s important to remember that it doesn’t necessarily mean the grief is over. Perhaps like me the chronic illness may not have a treatment or cure yet. The acceptance does not mean you don’t keep fighting for answers. Acceptance also does not mean that you don’t stop grieving. Chronic illness can trigger recurring cycles of grief as new challenges emerge.

Biblical Insight: The apostle Paul offers an inspiring example of acceptance in the face of physical hardship. In 2 Corinthians 12:9-10, he writes, “But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me… For when I am weak, then I am strong.” Acceptance of your chronic illness doesn’t mean defeat; it means allowing God’s strength to shine through your weakness.

The Power of Being Your Own Patient Advocate

One of the most empowering steps you can take on your chronic illness journey is becoming your own advocate. Being a patient advocate means standing up for yourself—ensuring that your voice is heard in medical appointments, treatment decisions, and beyond. It’s about educating yourself on your condition, asking questions, and actively participating in your healthcare decisions. Advocacy is essential because, with chronic illness, you are often the expert on your body.

Steps to Becoming a Strong Advocate:

1. Educate Yourself: Knowledge is power. Research your condition, learn about treatment options, and stay informed on the latest developments. One step I took was to carry with me a binder of my test results, studies done for the disease, protocols for medications, surgery, anesthesia. I encourage you to do the same.

2. Ask Questions: Don’t be afraid to ask your healthcare team for clarification. If something doesn’t feel right, speak up.

3. Build a Support Team: Surround yourself with a network of healthcare professionals who respect and listen to you. It is okay to change doctors. Also, build a personal support network with friends, family, or online communities of those who understand your journey.

4. Communicate Clearly: Practice clear and concise communication with your doctors. Prepare a list of questions before appointments, and take notes during the visit.

5. Trust Your Instincts: You know your body better than anyone else. If something feels off, trust your instincts and seek second opinions if necessary.

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Biblical Insight: As Christians, we are called to steward the bodies God has given us, even when they’re not functioning as we’d like. In 1 Corinthians 6:19-20, we’re reminded that our bodies are temples of the Holy Spirit. Advocating for your health is not just a practical necessity but a spiritual responsibility. By advocating for yourself, you honor the life and body God has entrusted to you.

Helping Others on Their Journey

One of the beautiful truths about suffering is that it equips us to help others in their suffering. In 2 Corinthians 1:3-4, Paul writes, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” Your chronic illness gives you a unique ability to empathize with and support others walking a similar path.

Ways to Help Others:

1. Share Your Story: Your story has power. By sharing your journey, you can encourage others who feel alone or misunderstood. Soon after receiving the diagnosis of MELAS I came across a lady on social media who talked about her diagnosis. Immediately I sent her a message asking for insight. She shared her journey with me. The tears flowed knowing that someone else understood. We can do the same for others.

2. Offer Practical Support: Whether it’s running errands for someone, accompanying them to appointments, or simply being a listening ear, small acts of kindness can make a big difference.

3. Be a Source of Hope: Point others to the hope you have found in Christ. While you may not be able to take away their pain, you can remind them of God’s unchanging love and faithfulness.

4. Start or Join Support Groups: Many people find healing in the community. Whether in person or online, joining or starting a support group can provide a safe space for sharing and mutual encouragement. There are many chronic illness warriors who have joined together for support. Please reach out to me and I will help you find the community that will best support you.

Trusting God Through the Journey

Grieving the losses that come with chronic illness is a journey—one that requires faith, perseverance, and hope. While each stage of grief presents its challenges, we can take heart in knowing that we are never walking this path alone. God is with us every step of the way, offering comfort, strength, and peace.

Romans 5:3-5 offers us a powerful reminder: “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”

In the midst of your chronic illness, know that God is producing in you perseverance, character, and hope. And as you walk this journey, advocating for yourself and helping others, you will experience God’s love in deeper and more profound ways.

Conclusion

The grief that accompanies chronic illness is real, but it is not the end of your story. Through faith, advocacy, and community, you can navigate the emotional ups and downs with grace and strength. Remember, God is not only present in your suffering but actively working through it to bring about transformation and healing—not just in your life but in the lives of those around you.

In your weakness, His power is made perfect. So continue to trust, advocate, and help others as you walk this journey of chronic illness, knowing that God is with you, offering comfort, strength, and hope every step of the way. As you grieve, don’t do this alone. One-on-one coaching is available where I guide you through this healing journey. Schedule a virtual discovery call at linktr.ee/beingrestoredtojoy