Guidance on what to do and what to say from a Rare Ally who’s been there.

By Laura Will

When a friend or family member receives a rare disease diagnosis, what you do know is that in the blink of an eye, their life looks completely different. What you may not know is how you should approach supporting them as they confront their new reality. You may struggle to be sure of what to say, how to help, and what the boundaries are. 

But the presence of a reliable and empathetic support system is crucial for anyone who is at the beginning of their rare disease journey. Here are six valuable tips from Know Rare’s Rare Ally Laura Will, to help you KNOW how to support your friend affected by RARE.

Reach out, show up—at the beginning, again, and again 

They may not get back to you for a day, or a week, or longer—and that is okay. Keep checking in. “I’m here if you need me.” “Thinking of you.” “Call any time.” They feel alone, and they are juggling a lot. They may not be at a place where they are ready to talk to you—do not take that personally. Even if the conversation is one-sided at the start, know they still feel your presence and support.

Replace “How are you?” with “How are you today?” 

Unless you’re sitting down for a long, private conversation with a box of tissues on hand, “How are you?” is too vague a greeting. All too often, “How are you?” triggers the gut response of “fine.” Fine is a lie—or at best, a half-truth. “How are you?” is a deceptively loaded question because they cannot possibly capture the totality of how they are doing in a single, brief response. Trust me: it’s too complicated. Instead, “How are you doing today?” is a question that subtly acknowledges that you are here to listen, while providing a more approachable pathway for them to share a manageable piece of their current state of mind. 

If you’re going to offer support, make it specific  

Don’t say, “Let me know if there’s anything I can do!” This puts the burden on them to ask for help—an additional mental hurdle. Instead try, “I’d like to drop off a meal this week. What day would be best for you?” “How about I set up a carpool plan for the next two weeks to get the kids to school?” or “Can I come over one morning with coffee? What day?” 

Practice active, non-judgmental listening

Their perspective is their truth. All of their emotions are valid as they work through this major change with its stressful symptoms and future uncertainties. They are going to feel a whole lot of emotions, many of which contradict each other. As a compassionate witness, you can be an amazing support. Don’t pity them. Enter conversations with curiosity, and a desire to understand only what they are willing and able to share at that moment. Don’t start a sentence with the words, “At least you…”  in an attempt to draw “silver linings” for them. If you do have advice or resources you would like to offer, first ask if they would like to hear about them. 

Avoid overloading them with questions.

Allow them control of the conversation. There are so many unknowns in the world of rare disease that it can be frustrating to try and answer questions about the future, even if those questions are coming from a well-meaning friend.  Don’t pry. If there is a break in the conversation, offer them an out such as, “I’m happy to keep talking about this, and I certainly am curious to learn more, but I want to take your lead on what is best for you today.” They are tired, and in fluctuating states of being stressed and overwhelmed. They may just not be ready to share. Again, don’t take it personally. 

Check in with yourself, and seek the support you deserve elsewhere

This might be the most important tip!  If you are also emotionally connected to the new diagnosis (for example, they are a close loved one), then seek your support from someone other than the newly diagnosed individual. Find space outside of your relationship with the newly diagnosed person to process what this means for you. Your ability to acknowledge and move through your own emotions will allow you to be a more reliable support and advocate for your loved one. While you can share with them your own emotions as a way of empathetic connection, your emotions should not be additional baggage for them to carry. Air out your emotional baggage somewhere else, with someone less emotionally connected to the diagnosis.