“I can totally relate, I once had [thing]”
-Anyone who finds out you have an autoimmune disease

“At least it’s not cancer”
-Also anyone who finds out you have an autoimmune disease

It’s Not Helpful When You Say That

No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you’ll often find that ‘real talk’ is bypassed for a combination of pity, fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don’t know how to talk to a sick person about being sick.

Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it’s something I wish I would have recognized and embraced earlier on in my disease journey. It cuts to the chase of getting the support I need, from the people that are doing their best to provide it. It helps us skip the awkward dance where neither party is happy or sure about what to say. It paves the way for real talk and reminds us that caring for, and talking about, disease is way more important than some semblance of proper conversation.

Skip Straight to the Real Talk

I recently had a friend disclose her major diagnosis on social media. After giving herself time to start processing and begin treatments, she posted an open and honest announcement to her network, to be met with hundreds of reactions showing support and care. As I read through the stream of “You got this!” and “You’re stronger than this!” and “If anyone can beat this, you can!” I couldn’t help but feel a reaction myself, as a veteran of a similar-but-different life-changing illness. I recognize that I am not her, and not the one actively in those exchanges, but it reminded me of so many times where those words of intended encouragement did the opposite – they reminded me that there is not really a ‘beating this’. Life is changing forever, and there might not necessarily be an ‘overcoming’ as much as a ‘new normal’.

People tend to react this way for a range of reasons. It’s a little bit of social norms. Don’t ask uncomfortable questions, be polite, don’t talk about mortality. Don’t bring up digestive topics, try and dance around that. Save that for the clinic. It’s a little bit of their own fear. Their friend/relative/coworker is facing something huge. They’re likely facing their own unknowns. They want to believe that everything is under control. They might even have some introspection. What if this happened to me? And it all comes out in words of oversimplified strength and victoriousness. I won’t lose this person to disease. And if I were facing it, I’d just have to be strong enough. Finally, it’s a little bit of just not knowing. Of not having been on the other side. Of assuming they are saying and doing the right things. This is where leading the narrative comes in.

Learn to give yourself permission to guide this narrative, and you’ll give others permission to engage in a way that matters to you.

It’s Your Story, You Can Tell It On Your Terms

I had another recent conversation with a different friend who, when dealing with her own health crisis, asked in desperation – “How will I tell people?” My first reaction was either perfectly logical, or entirely non-helpful. “However you want!” After some thought, ‘however you want’ came out more eloquently – you tell it on your terms. You don’t let people place assumptions over an experience that is yours and yours alone. You tell who you want, when you want, and how you want. You don’t owe anyone an explanation, and you are certainly under no obligation to tell your story just because you think you should.

“Don’t let people place assumptions over an experience that is yours and yours alone. You are certainly under no obligation to tell your story just because you think you should.”

Of course, that comes from my own 20,000 foot view of disease. But, let’s take it back to that ‘social norms’ thing. People say the things they say because they think they should – they believe it’s the right, best way. And we, as patients, reply in agreement or gratitude because we believe it’s the right, best way. But what’s really happening is that while we’re dancing around this exchange, we’re losing out on the opportunity for a better conversation, and wasting our limited physical and emotional energy.

When you learn to tell your story on your own terms, you start to guide the narrative, and then you are able to effectively craft it around what will truly align the support you need with the support you are provided. And you know what? It’s perfectly okay to take this over and lead.

How To Lead The Narrative

Nudging people to have better conversations is pretty easy and unabrasive. The right people (read: those who care about you) will appreciate, and learn from this guidance. In the end, you’ll likely find that you better get what you need, from tangible support, to a space that grants you the opportunity to be raw and vulnerable. Because after all, navigating autoimmune disease itself is enough of a battle, and any little thing you can do to make it easier will help.

Here’s what you can do:

  • Just tell people. Yep, simply tell them when they are off, when they say something unconstructive, or when they simply need a better alternative. Keep it super simple “It’s actually not helpful when you say that” or add an explanation “I know your intentions are in the right place, but when you say this, it actually makes me feel like this…” You may also recognize when they are on the right track “You just said exactly what I needed to hear” and again, with some elaboration “I appreciate you saying that because it really makes me feel supported”.
  • Guide them down an alternative. This is really where you take control of the narrative and teach people how to have these conversations. You can offer more helpful things to say in the moment, or prepare some in advance, or even both. If you’re new to this diagnosis, start to pay attention to what words or actions are most meaningful to you. Make a list – a literal list – and have some things ready to go for when people ask how they can best support you, or when you need to nudge them down this path.
  • Set your own stage. Talk about the things you need to talk about, unapologetically. You can say that you’re scared, lonely, or unsure about your future. You can talk about bowels and surgeries and medications and brands of toilet paper. You’re managing the tone and opening up permission for everyone to join those topics of conversation.
  • Build variation into your narrative. There may be times when the words of strength and encouragement are exactly what you need. There may be times when you need to get angry. Times when you need to laugh, cry, talk, or just be. Start to recognize these as well, and help teach those around you. And in the moment, it’s okay to tell someone exactly what you need exactly when you need it. That can be something like “I appreciate that, can you say that to me next week when I’m going in for treatment?” or even simply “That’s not a helpful thing to hear in this moment.” Oh, how I wish I would have learned to do this earlier in my journey!
  • Write it down and hand it out. Yep, get even more literal and tangible with this. When you’re in the throes of managing a flare, or navigating a new diagnosis, it can be exhausting to repeat the same conversation over and over. What are the best things someone can do when they are looking to support you? Type it up, print it out, hand it to people. Write it in an email response, have it ready to go. Post it on Instagram. Post it repeatedly, whenever you need it.
  • Give people more tools. Do you need your best friend to encourage you through your bi-weekly injection medication? Set a recurring calendar invite for them to check in. Have surgery planned for the end of the month? Ask people to drop some encouragement the day before, and then check in 2 weeks following. Set up a schedule that benefits you and takes the work out of it for everyone.
  • Communicate accurately. People don’t know what they don’t know. If you tell others that IBD is ‘just a stomachache’, they will respond with the level of care equated to a stomachache – something they’ve had, they’ve gotten over, and they understand to not be a big deal. If you tell others that IBD is what it is – a serious, incurable, lifelong, autoimmune disease, it paints a more accurate picture for them, and gives them what they need to know to better adjust their support.
  • Teach people what ‘chronic’ really means. This might be the hardest part of all. When you’re first diagnosed, or you first disclose your disease, the support often comes pouring in, but often, unfortunately, it fades. To you, this may feel like people don’t care and this is the heartbreakingly worst feeling. But to non-sick people, this feels like a mix between casual forgetfulness, and a construct that ‘sick people get better after a matter of time’. Even more, people forget that when you’re feeling good, you still have IBD. And even in this case, guide them in how to support you. Remind them that in 6 months from now, 5 years from now, 20 years from now, their support is still meaningful, valuable, and appreciated.

Bringing these types of things into your narrative can apply to all sorts of topics. It can help address tangible things, like asking for rides to appointments, or having someone drop off groceries. It can be the conversational things that we’ve covered. You can ask for someone to come over and sit with you and do nothing more than just be present together (*not during the pandemic), or tell someone they can support by standing in the middle of a field and screaming. You can set yourself up for some harder times ahead with a “Hey, I’m feeling good now, but I’ve got some tough appointments coming up. Get your meme game ready for me!” or an even longer time ahead, “My Crohnsaversary is January 11th, could you set a reminder to check in and let me know you’re thinking about me, even if I’m in remission?”. Be straight with people. Tell them what to say, tell them what you need.

The more you start to find your own path, the more you can lead others through your narrative. The more you’ll find the support you need, and the more effective people will feel at being there for you in a meaningful way. It’s one of the best things I’ve learned from my own disease experience, and one I wish I’d figured out sooner.

Getting back to my friend who’s mastering her own navigation of a recent diagnosis; our conversation went much like this:

“People don’t know what to say. I’ve found it helpful to guide the narrative.”

“I can do that?”

“Yes, you can do that.”

Yes, you can do that.