Patient Empowerment
Starting Tool for Patients
This guide is designed to help you explain your condition clearly and confidently to your healthcare provider. Rare conditions can be difficult to diagnose and manage, but being prepared can improve your care experience.
The following guide does not constitute medical advice.
Step 1: Share key information clearly36
When discussing your condition, it is helpful to focus on clear, organized details. Use the following structure to describe your experience:
- What are my top 3 symptoms?
- When do these symptoms occur? (e.g., after eating, at night, during stress)
- How do these symptoms feel? (e.g., sharp pain, bloating, nausea)
- What triggers have I noticed?
- What helps relieve symptoms? (e.g., rest, specific medications, hydration)
Step 2: Describe how it affects your life36
Help your provider understand how your condition impacts your daily activities. You can describe:
- Challenges with eating, sleeping, or daily routines.
- Emotional effects such as anxiety or stress related to your symptoms.
- Social impacts like missing work, school, or social events.
“I struggle to eat most meals without severe stomach pain, which has made social gatherings difficult.”
Step 3: Prepare key questions for your provider36
Asking clear questions can improve communication and help you get the information you need. Consider these:
- What tests can help confirm my condition?
- What treatment options are available for rare conditions like mine?
- Are there specialists I should see?
- Where can I find trusted resources for my condition?
- Are there clinical trials or research efforts I should know about?
Step 4: Advocate for yourself at your appointment36
Rare conditions are often misunderstood, so it’s important to advocate for yourself effectively. Try these strategies:
- Be clear and direct. Start by saying, "I have a rare GI condition and I’d like to discuss my concerns."
- Use written notes, Bring this guide with you to stay on track.
- Don’t be afraid to ask for clarification. If you don’t understand something, ask, "Could you explain that in simpler terms?"
- Request referrals if needed. If you feel your provider doesn’t have experience with your condition, ask, "Can you recommend a specialist familiar with rare GI conditions?"
- Bring support if possible. A trusted friend or family member can help you remember key details or ask important questions.
Trusted Resources for Rare GI Disorders
