The Unseen Struggle: Living with Invisible Symptoms After a Liver Transplant
A Life-Saving Operation, But Not the End of the Story
Seven years ago, I received a liver transplant — a moment that undoubtedly saved my life. I live with Autoimmune Hepatitis Type 2, a rare and chronic condition that, even after a transplant, hasn’t simply disappeared. Although I’m grateful every single day to be here, my healing journey is far from over. This experience is something I want to share, especially for those who are quietly living through something similar.
When You Look “Well” but Feel Broken
On the outside, I may look “well.” I may smile, show up when I can, and speak about healing with honesty and hope. But the truth is, many of my symptoms are invisible. They don’t show up in photos or casual conversations, but they shape every day of my life.
Fatigue, Brain Fog, and Days on the Sofa
I often struggle with extreme fatigue — not the kind a good night’s sleep can fix, but the kind that makes it difficult to even sit upright some days. I experience debilitating brain fog, muscle aches, and a level of exhaustion that leaves me sofa- or bed-bound for hours, sometimes days. These are not just side effects of my condition but also of the lifelong medications I take to prevent my body from rejecting my transplanted liver.
The Medications That Keep Me Alive — and Their Side Effects
Medications like Tacrolimus (Adoport), Prednisolone, Acyclovir, and Levothyroxine help keep me alive — and for that, I am truly grateful — but they also come with a complex list of side effects. From insomnia, anxiety, and memory issues to muscle weakness, nausea, and mood swings, these aren’t just inconveniences. They’re part of the daily terrain I navigate.
The Challenge of Being Invisibly Disabled
And yet, this is something so many people don’t see. Our world still struggles to understand that disability is not always visible. You don’t always see a walking stick or wheelchair. Sometimes, it’s someone sitting quietly in the corner at a gathering because their body is barely keeping up. Sometimes, it’s cancelling plans — again — because pushing through would mean crashing for days after.
Healing Isn’t Always What It Looks Like
This isn’t about seeking sympathy. It’s about creating awareness. I use every healing modality to support my body and spirit — from rest and nourishment to meditation, breathwork, energy work, and gentle movement when I can manage it. These practices help me hold onto hope and softness in the storm. They are powerful, but they are not a “cure.”
Redefining Healing and Disability
Healing is not linear. And healing doesn’t always mean returning to our life before illness or diagnosis. For some of us, healing means learning to live inside a body that may always need extra care and still setting boundaries with love.
Please Pause Before You Judge
So next time you see someone smiling but withdrawing early from an event or someone parking in a disabled spot and walking away without any obvious sign of difficulty — pause. Consider that they may be carrying an invisible weight you can’t see.
Disability doesn’t have a single face. And healing, as beautiful as it is, doesn’t always look like wellness.
With love,
This Healing Feeling
Current Medications:
- Adoport (Tacrolimus) 1mg x 2 – Immunosuppressant to prevent organ rejection
- Prednisolone – 3mg – Steroid to manage inflammation and immune response
- Acyclovir – Antiviral to prevent infections due to immunosuppression
- Levothyroxine (75 micrograms) – Thyroid hormone replacement therapy
Each of these medications plays a vital role in keeping me stable, but they also contribute to the invisible symptoms I live with daily — fatigue, brain fog, mood shifts, sleep issues, and more. This is part of my story, and I hope it helps others feel seen in theirs.