Every medical appointment is an opportunity to learn more about systemic mastocytosis (SM) and play an active role in the management of your disease. But speaking up when you don’t understand something — or when your opinion is different from your doctor’s — isn’t easy for everyone. Learn why this skill is important, and what steps can help build your self-advocacy toolkit.
What does advocating for yourself mean?
Self-advocacy means playing an active role in your care. This includes everything from listening, asking questions and taking detailed notes during a doctor’s visit to being persistent if you don’t feel you’re getting the right care.
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Why is it important in rare diseases like mastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults.?
Self-advocacy is important for any patient, but it’s especially important in rare disease. Unless you’re visiting a specialist, you might be the only patient with SM a doctor meets in their whole career. They might not know much about mastocytosis, if they’ve heard of it at all. For many patients, this can mean you know more about many aspects of your disease than your doctor. In order to manage SM, you may need to emphasize when something isn’t working or advocate for certain tests and treatments.
This puts providers in a new role — one where they’re always not the expert. Health professionals don’t all react the same way to this self-advocacy. While research has found that many doctors are happy to work with proactive patients, some react poorly. Rare disease patients need to walk a fine line between respecting their doctors’ qualifications and experience and making their needs heard.
Read a patient’s firsthand account of fighting for a diagnosis: “Self-advocacy in survival mode: My journey to an SM diagnosis”
Speaking up: How to advocate for yourself
Self-advocacy might not be easy, especially at first. While it can feel empowering and meaningful, it requires attention to detail and not being afraid to share your concerns and personal experience.
Before your appointment
Self-advocacy starts well before you head to a doctor’s office.
Knowing exactly how SM is affecting you is the first step. Between medical appointments, this means:
- Keeping a detailed diary of symptom triggers.
- Filing testing and imaging results.
- Logging how SM affects your daily functioning and well-being overall.
Before a visit, take some time prior to prepare. Medical appointments are often short; being clear and concise will save you and your doctor precious time.
- Read through your symptom diary to refresh your memory of events since your last medical appointment.
- List all the questions and concerns you’d like to discuss.
- Plan how you’ll take notes: pen and paper, phone app, or (if permitted) voice memo.
Taking notes and speaking up may be a lot to handle, especially at first. Consider asking a friend or family member along to help; they can serve as your note-taker or help emphasize your concerns.
During your visit
Interacting with your provider should be a dialogue, not one-way communication. To participate in a meaningful way, try to:
- Share your concerns and priorities; be specific.
- Listen actively.
- Ask questions.
- Get clarification if you feel you don’t understand something.
- Take notes on what was discussed.
If you need to challenge what your doctor is saying, be respectful but firm. Balance is important: being thankful and appreciative for helpful parts of the conversation can keep the tone positive.
Learning to engage with health professionals in a way that benefits your care can take time. With each medical appointment, you will grow in confidence.
After your appointment
After your appointment, run through everything you discussed either by reading over your notes or discussing it with your support person.
- Did you get adequate answers to all your questions?
- Was anything overlooked or skimmed over?
- Do you feel comfortable with the information, treatment or advice you received?
- Are the next steps clear?
If you still have questions, reach out to your doctor or schedule an additional appointment. You may also want to consider getting a second opinion, if you have doubts or are dissatisfied by the care you’re receiving.
Learn more about managing SM: “Why routine monitoring is key in systemic mastocytosis care”
