living with kidney disease: learning to cope with a life i didn’t choose

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there’s something uniquely painful about grieving the version of your future you always assumed was certain.

by christina mangiola

published mar 11, 2025

2 minute read

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2 minute read

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"this experience has reshaped the way i see life. i can’t change my diagnosis, but i can choose how i respond to it." supplied

nothing prepares you for the moment you learn your body will never be the same again.

at the start of 2023, i began dealing with a series of unexplained health problems. despite undergoing multiple invasive procedures, doctors struggled to find a cause. every test came back negative, month after month, leaving me without answers. finally, in march 2024, my doctor ordered an extensive round of testing to rule out any serious conditions. that was when i received my diagnosis: iga nephropathy (berger’s disease), a kidney disorder caused by antibody buildup that gradually impairs kidney function. in a significant percentage of cases, the disease advances to end-stage renal failure, often requiring dialysis or a transplant.

hearing this news was overwhelming. i had no family history of kidney disease, which made it feel even more surreal. i was suddenly faced with an uncertain future, one where my health would never be something i could take for granted. questions flooded my mind: how would this impact my future? would i be able to have children? what would my quality of life look like in the years to come?

there’s something uniquely painful about grieving the version of your future you always assumed was certain. i had mapped out a life for myself, and in an instant, those plans no longer seemed as achievable. everything changed faster than i could process it, and i found myself struggling to keep up. at an age where i should be living care-free, i am instead forced to confront the reality that my body is failing me in ways i never anticipated.

and the truth is, i hate it. i hate what my body does to me. i hate that it feels like it’s working against me instead of for me. i hate that my kidneys will continue to decline. the endless cycle of appointments, blood work, and tests is exhausting, knowing that this isn’t temporary, that this is the rest of my life. it’s frustrating, and it’s unfair, and some days, i just want to scream at the universe for handing me this reality.

despite the uncertainty, i have found solace in the support of those around me. my husband, family and friends have been my anchors, offering comfort when the weight of my diagnosis feels too heavy. the kindness of those who check in, who remind me i’m not alone in this, has been invaluable.

this experience has reshaped the way i see life. i can’t change my diagnosis, but i can choose how i respond to it. i could spend my days dwelling on the unfairness of it all, but that wouldn’t change anything. instead, i am learning to live in the present, to cherish the moments of joy when they come, and to accept that while my future may not look the way i once imagined, it is still mine to shape.

if there’s anything i’ve learned from this, it’s that life is unpredictable. the path forward may not always be clear, but we adapt, we keep moving, and we find new ways to dream. because even when everything changes, there is still so much worth holding onto.