12/03/2026
Life is sometimes exhausting but when you have a “second job” of managing an invisible condition it’s exhausting daily both mentally and physically. We often live in Unseen Realities of Chronic Illnesses.
As I celebrate World Kidney Day today together with my fellow warriors I’ve come up with a list of a few things we wish people knew and understood.
1. The “Spoon Theory” Calculation: Every single choice, from answering a phone call to doing a load of laundry requires a mental calculation of how much energy it will cost and what you will have to give up later in the week to pay for it.
2. The Loss of Spontaneity: The reality that almost everything must be planned, paced, and prepared for, leaving very little room for the “just because” moments of life.
3. The Anxiety of “Good Days”: The strange fear that comes with a high energy day worrying that if people see you doing well, they won’t believe you when the “bad days” inevitably return.
4. The “Masking” of Pain: Learning to smile through significant physical discomfort, not because of a lack of honesty, but because the effort of explaining the pain is often more draining than the pain itself.
5. The Invisible Weight of “Normal” Tasks: Basic activities, a shower, a quick errand, or preparing a meal, washing a plate can consume an entire day’s worth of energy, leaving nothing left for anything else.
6. The Burden of Rest Guilt: the internal battle of feeling like you are “lazy” or “failing” when your body is physically screaming for the rest it requires to function.
7. The Loneliness of Being Unseen: The unique ache of being in a room full of people who love you, yet feeling completely isolated because they cannot see the internal struggle you are navigating in real-time.
8. Grieving the “Former” Self: The quiet, ongoing process of mourning the person you used to be, the one who had spontaneous energy, physical freedom, and a life without constant calculation.
9. Medical Gaslighting by your Medical team and Self-Doubt: The exhausting cycle of having to advocate for yourself in medical settings, and the moments where you start to wonder if you are imagining your own symptoms because they are so hard to pin down.
10. Cognitive Fog/Brain Fog or Kidney Brain: The frustration of knowing exactly what you want to say or do, but feeling a thick, mental wall between your thoughts and your ability to execute them.
We are navigating a path that requires immense resilience but sometimes we crave 'JUST BEING’ and understood.
