Friends and family are critical allies to a rare disease patient and their treatment. However, living with a rare disease may be difficult to fully understand for those who don’t have a diagnosis. Many times, friends and family have good intentions, but sometimes, those intentions add to the burden of rare disease management.
If you know someone with a rare disease diagnosis, you may feel the urge to help—you may also be wondering how you can help without burdening them. We’ve created a simple guide that discusses the dos and don’ts of supporting a rare disease patient and how to be an ally.
Sympathy vs. Empathy vs. Compassion
You may be quick to offer sympathy, empathy, compassion or a combination to someone with a rare disease diagnosis. While these words are synonymous with emotions, they aren’t interchangeable and have different meanings.
The differentiator between sympathy, empathy, and compassion is the expression and experience our emotions make toward someone’s situation.
- Sympathy: Feelings of concern or compassion resulting from an awareness of the suffering or sorrow of another.
- Empathy: Understanding a person from their perspective of reference rather than yours or indirectly experiencing that person’s feelings, perceptions, and thoughts.
- Compassion: The combination of both sympathy and empathy with a desire to alleviate suffering.
For instance, you hear someone’s bad news, share your feelings, and apologize. This situation is rooted in sympathy because you aren’t putting yourself in their position and imagining yourself in the struggle.
If you were to empathize with them, you would imagine yourself experiencing that struggle and feeling the accompanying emotions.
Finally, compassion is a friendly presence that aims to connect with the person by practicing sympathy and empathy.
Toxic Positivity
People often revert to finding a positive to help when they hear sad or disappointing news. But it’s important to understand that while having a positive mindset is essential in supporting a rare disease patient, toxic positivity can cause them harm.
Definitions of toxic positivity vary but occur when encouraging statements minimize or eliminate painful emotions, creating unrealistic optimism without considering the circumstances.
For example, the popular statement, “Everything happens for a reason,” may seem like a positive way to reframe bad things that happen, but it can also be perceived as avoiding the other person’s pain. Instead, resist this cliché, acknowledge their pain, and offer support.
Do’s and Don’ts of Being an Ally for Rare Disease Patients
As you prepare to be an ally for a rare disease patient, consider these dos and don’ts.
Don’ts
- Don’t ask if they’ve tried a particular treatment or supplement. This statement could imply the patient isn’t working hard enough to manage their condition or forces them to defend their current treatment. If you know about a particular treatment or supplement, ask permission to share your ideas and explain why.
- Don’t revert to positivity cliches. For example, avoid saying things like, “You’re dwelling; try not to obsess,” “Look on the bright side,” or “Other people have it worse.” It’s not productive to suggest that changing one's outlook can change one's situation.
Do’s
- Do offer specific kinds of help. Listen and provide help where it’s needed. For instance, if a rare disease patient can’t get to the grocery store, offer to pick up grocery items while you’re out.
- Do find reliable resources and research. For example, platforms like The National Organization for Rare Disorders (NORD) and Mayo Clinic offer research-backed information about various rare diseases. Educating yourself increases your understanding of a person’s condition and the symptoms.
- Do listen. It might sound simple, but listening to a rare disease patient is the best way to support them.
