Video Summary - EU SÓ QUERO VIVER

Key points & self-care / wellness strategies mentioned

Returning home was psychologically difficult—she described “returning to reality” and how the reality of lifelong illness triggered worsening severe depression.
She sought support and is now in therapy, and says she’s improving mentally—enough to create this video.

She emphasized that for her disease (FAP), there is no remission and no cure—only monitoring and experimental options.
At Mayo, she was looking for a clear medical roadmap (“what they can do from here on out”), not reassurance that she’d be cured.
Wellness takeaway: shifting from “waiting for a miracle” to anticipatory planning reduced fear and improved her sense of safety.

She received something emotionally powerful: a booklet specifically about her disease, which made her feel “seen for the first time.”
She also highlighted how being treated at a top specialized center offered:
- More tailored explanations
- More options for organ-preserving approaches than she’d been told in Brazil
- Forward planning for possible future developments

After returning to Brazil, the disease progressed again; she had to use a feeding tube again and had follow-up endoscopy.
Instead of stopping life, she focused on continuing what she can do within limitations.

When overwhelmed by debts and fear, she became more reclusive and stopped talking as much about her health.
Now she’s rebuilding routine and purpose by:
- Doing live streams
- Playing games
- Painting
- Planning real-life goals like travel, walks, and making her parents happy

She pushed back against being called a “victim,” distinguishing between:
- Being aware of problems
- Versus blaming problems without taking action
Her coping includes owning her situation while still choosing agency and effort.

A key belief she repeated: a diagnosis isn’t defeat.
She acknowledged she doesn’t know what will happen tomorrow, but decided her choice is to keep living and making the most of the present.

She faced online harassment related to her crowdfunding campaign and said she had to involve authorities.
She also closed the campaign after not reaching its goal, while still coping with significant remaining debt.

Seek mental health support (therapy) when depression worsens after major life transitions
Aim for a workable medical plan (monitoring + possible interventions), not a promise of cure
Prioritize specialized care that offers tailored explanations and options
Lean into “what I can do now” when the body changes (activities within limitations)
Maintain connection and purpose (live streams, creative hobbies, community)
Use agency-based reframing (“diagnosis doesn’t mean defeat”; not “victim,” but problem-aware and proactive)
Accept uncertainty while committing to living (choose to continue regardless of fear)
Protect mental well-being from public stressors (handle harassment through authorities; step back when overwhelmed)