Grief is an ongoing process when you live with a chronic illness
Every shift in symptoms or treatment creates a new loss
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We are taught that grief is a mountain. A journey we climb. A path with a beginning, a middle, and an end.
Society loves to hand us the map of the five stages of grief — a neat, organized progression where we move through denial, anger, bargaining, depression, and eventually arrive at acceptance. We are told that once we reach that final peak, once we plant our flag at the top, we can finally breathe. The pain has been processed; the loss has been acknowledged. Healing is complete.
But those of us who live with a rare, chronic, progressive, or unpredictable illness like angioedema know that this map doesn’t tell the whole story.
Grief looks different when our bodies keep changing
After receiving my diagnoses, I didn’t just grieve my health. I grieved the life I thought I was going to have and the future I imagined. I grieved the version of myself who moved through the world without hesitation — without calculating every decision around symptoms, medications, appointments, insurance battles, and the constant uncertainty of what comes next.
I grieved things I never realized I would miss: the ease of making plans, the freedom of trusting my body, and the ability to say yes without wondering if tomorrow will look completely different. And then, somehow, I was expected to accept it. I was expected to process the shock, adjust, find my new normal, and move forward into a permanent state of coping. But a rare disease does not sit still long enough for permanent acceptance.
Grieving health happens in chapters
There are moments when I finally feel like I’ve found my footing again. I’ve started learning my body’s patterns, understanding my limitations, and creating routines that work. I’m rebuilding pieces of my life that illness forced me to rearrange. Slowly, I begin to recognize myself again. I think maybe this is acceptance; maybe this is where I’ll stay.
And then the disease shifts.
A new symptom appears. A treatment that helped keep me stable suddenly stops working. A medication I depended on is no longer enough. A routine insurance decision, denial, or delay disrupts the care plan I fought so hard to create. And suddenly, the ground moves again.
The clock resets. I’m pulled back into the anger, fear, frustration, and exhaustion I thought I had already worked through.
It can feel like I’m being asked to mourn the same thing over and over again. But the truth is, it is not the same loss. Every change creates a new loss. Every new symptom asks me to adjust to a version of myself I never expected to become. Every unexpected turn forces me to let go of something I was just beginning to accept.
That is the part people do not always see. They may think, “But you have already been through this.” What they don’t understand is that chronic illness is not a single moment in time. It is an ongoing relationship with uncertainty. It is constantly learning how to live inside a body that can change the rules without warning.
A unique kind of grief
Living with chronic illness means grieving the freedom other people experience without thinking about it. It is grieving the ability to make plans without backup plans. It is grieving the version of ourselves who did not have to explain, advocate, educate, and fight so hard just to receive care. It is carrying invisible exhaustion while still showing up. It is smiling through conversations while quietly wondering how much more adapting one person can be expected to do.
But returning to grief does not mean we have failed. It does not erase the healing we have already done. It does not mean we are back at the beginning. It means we are human.
When we live with a rare disease, grief is not something we conquer. It is something we learn to carry. It becomes part of the story — not the entire story, but a chapter that continues to shape who we are.
Maybe the goal was never to reach a place where grief disappears completely. Maybe the goal is to learn that grief and joy can coexist. Because every time the carousel comes back around, we are not the same person who started the ride. We return with more strength, wisdom, and compassion for ourselves.
We learn to build a life around uncertainty rather than waiting for it to disappear. We learn that a life touched by chronic illness is not a smaller life, but one that requires a different kind of courage. A life where we celebrate differently, love differently, and find meaning in moments we once overlooked. The carousel may keep spinning, and the grief may return. But so do we. And every time we come back around, we bring more of ourselves with us.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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