My Life Is Proof That God Is Still Working

I was born with something I did not choose. It is a rare genetic condition passed down and written into me before I ever had a say. TMAU. For a long time, I did not know its name. I only knew the feeling of being different, even when I could not explain why.

When I was younger, it was not so obvious. I could blend in. I could feel normal. But as I grew older, the condition grew with me. The odor became stronger, harder to control, and harder to hide. No matter how much I tried, it was always there following me into rooms, into conversations, and into my thoughts.

I still went after the things I loved. I showed up. I pushed myself. I told myself I would not let this stop me. And for a while, it did not. But living with TMAU means there is only so much you can do before it starts to take a toll.

Insecurities crept in quietly. I started to second guess myself, hesitating before speaking, before getting close to people, and before allowing myself to be seen. I became hyper aware of reactions, of distance, and of silence. Some days, the emotional weight felt heavier than the condition itself.

I have faith that one day there will be a cure, or at least better ways to manage this condition. I hold tightly to that hope because it reminds me that this is not the end of my story.

But right now, I am struggling.

Not being able to manage TMAU the way I wish I could make everything harder. It affects how I see myself, how safe I feel in my own body, and how much space I allow myself to take up in the world. Some days feel unfair. Some days feel lonely. Some days, I am simply tired of being strong.

Still, I keep going. I remind myself that this condition does not define my worth. My struggles do not make me weak. Surviving something invisible does not make it any less real.

I am learning to be patient with my body, with my heart, and with the process. I am learning that it is acceptable to grieve the ease I wish I had while still believing in a better future.

I live with TMAU.I struggle. I hope. And I am still here.

What “Equity” Means in My Story

Equity is having a fair chance to live, participate, and be seen as fully human while living with TMAU.

It means:

• Not having to work ten times harder just to be treated the same.

• Receiving understanding instead of judgment.

• Getting support that matches your needs, instead of being told to try harder.

• Being given grace for something you did not choose and cannot fully control.

For someone living with TMAU, equity looks like:

• People recognizing that odor does not reflect poor hygiene.

• Workplaces, schools, and social spaces showing compassion and flexibility.

• Access to research, treatment options, and emotional support.

• Being able to exist without shame.

Day to Day Life

Constant self-monitoring: What you eat, how you smell, how people react, where you sit, and how close you stand. That level of awareness is exhausting.

Social anxiety and isolation: Even when no one says anything, the fear of judgment can make work, school, relationships, and errands feel unsafe.

Emotional weight: Shame, frustration, sadness, anger, and grief for the life you wish you could have without thinking about any of this. Those feelings are real.

Living through trial and error: Diet changes, supplements, routines, and doctors who do not always understand. Being your own researcher is tiring.

Yet people with TMAU are often:

• Deeply empathetic

• Highly observant

• Resilient

• Emotionally strong

Not because they should have to be, but because surviving this condition requires strength most people never develop.

Hope and Strength

My greatest sources of strength are my family, especially my parents and my daughter. They remind me why I keep going and why my life has purpose.

My faith in God is the foundation of everything. I believe I was chosen to live with this condition for a reason, which makes me special, not broken. God has a plan for me, and because of that, I choose to cherish every moment of my life. Even on the hardest days, I stay hopeful, knowing that God has answers, has reasons, and never makes mistakes. Through Jesus, I believe that all things are possible.

My faith helps me stay grounded, trust the process, and remain steady when things feel overwhelming.

What I Want Others to Understand About Rare Diseases

Rare diseases affect far more than the body. They impact mental health, emotions, relationships, and daily life in ways people cannot always see. A rare condition does not make the person living with it rare in value or purpose.

We do not need pity. We need understanding, patience, and compassion.

Living with a rare disease requires strength, faith, and resilience every single day. Many of us rely on hope, family, and spiritual grounding to survive and grow.

Behind every rare diagnosis is a human being who deserves love, respect, and the chance to live fully.