Most of us facing rare diseases or medically complex life have had the experience of feeling like no one (or not enough people) are there for you when you need them. And to be fair the opposite can also be true; I’ve been amazed time and time again at who does show up. It’s seldom the people you’d expect. But to the extent that this lack of support is understandable I trace it back to our societal norms and expectations. How do any of us know how to act or react in any situation? A friend needs help and compassion. That can be too vague to process, especially when the reason for it is something we’ve never encountered. And with rare diseases a whole lot of it falls in the bucket of stuff people have likely not encountered.
I’ve found where people do best is where we have more commonly understood expectations. Often these become crystallized in society as rituals. Rituals for compassion. The clearest examples might be around a death. You might sit shiva, attend a funeral or a wake, you might send flowers, a card or casserole. Culturally we have a bit of a playbook for how to be supportive at key moments. To a lesser extent key moments might include the news of a dire diagnosis. I’ve found people are pretty good about showing up in the first days after diagnosis when the news is fresh and the stress most acute. Other discrete moments where our need may seem more obvious might be emergency hospitalizations. Many friends and loved ones know how to show up for these. Some physically show up at the hospital, perhaps with a gift or a meal. Others send cards or well wishes. For the most part our shared communal life prepares us with at least some general guidance of how to be supportive for these moments.
But beyond these discrete moments and more specifically between them, are so many more needs, less apparent needs, less appreciated or understood needs. By definition a chronic illness comes with chronic challenges and chronic needs. How have we not more commonly realized it comes with a need for chronic compassion and support?
I can recall too many friends who were there for us at diagnosis and there for us when my son passed and yet I feel there was a ten year stretch of struggle in between those two events where we had equal or greater need for support.
I want to be fair and acknowledge this is a lot to ask of people. How can they know what we don’t tell them? Is this just a case of you won’t get what you don’t ask for? But there’s a trap here too. Families facing rare disease have struggled with well intentioned offers of some vague help. “Let me know what I can do.” “Is there anything I can do?” Often we bristle at this or pass it off with a no thank you, largely because with all the burdens we are managing we do not want to add a new burden of figuring out the way you can help.
One part of the solution can be if those offering help add a specific to their offer. “Is there anything I can do? Maybe babysit Saturday?” This is helpful even when the specific offer is not one you need. It helps signal their seriousness and degree of willingness. It can be a way of level setting expectations too. Imagine the friends who asked “Is there anything I can do? Maybe build a downstairs bathroom for you?” First of all, wow! But if we didn’t want or need that bathroom, we now know this is the friend who might be willing to help build a wheelchair ramp. And smaller offers help in the same way. “Can I bring over groceries?” might make us more comfortable asking that person “Could you pick up my kid from school instead?”.
And the flipside is that we should be more prepared for when the vague offers come our way. People will offer to help. We should know what help we want from them. It’s much easier and less awkward if we have this as a list ready to go before anyone asks. For me a webpage with a wishlist or to-do I can point them to is useful. It also means they can pick the things they are more capable of or willing to do. But having a printed list at the ready can do the same thing.
As much as these strategies may help they still rely on moments when people see the need to offer help. We may know the answer to when do you need help is “always”. But that’s probably not as obvious to the rest of the world as we think. The more we seem to be managing well, the less we’ll get offers of help. Way to go us. We got our act together just enough to make it look like we don’t need help.
And this can even work against us with the more obvious moments of needs. Earlier I said an emergency hospitalization would likely bring support from our people. True, except, with chronic illness we are probably turning emergency hospital trips into something so frequent they start to look like routine hospitalizations. And then the offers of help drop off, because again it looks like we got this covered.
This was one reason I began posting to FaceBook each time my son was hospitalized. In part it was the easiest way to keep loved ones up to date –easier than texting a dozen people. It was also with an eye open to the risks. Every hospital stay held the threat of going badly. I made myself think how much worse for our friends and family it would be to hear seriously bad news without the forewarning of: we’re in the hospital now. But yes, another consideration was to let our people know we were in the midst of tough times, tougher than usual times. Not so much so they’d rush to visit us in the hospital but more in case we had a need to ask for help they might see it coming or better judge how serious the need was.
So this is my wish. I wish we (all of us as a society) had more frequent markers of these moments of need from others. So we wouldn’t wait for the big bad news day, or the hospital stay or the death. Between each of those are so many more chronic moments of need. Can we ritualize chronic compassion? And I don’t have a great answer as to how this would work. My mind drifts toward the advice “Practice Random Acts of Kindness”. When ever I see that slogan I tell myself oh I really need to schedule some random acts of kindness. And of course that is not very random is it? BUt maybe that gets us part way there. Maybe it’s better restated as “Practice Frequent Acts of Kindness”. It could happen.
I also think about how not many years ago few people had heard of Giving Tuesday. Could something based on the calendar be made to help here too? Maybe we ritualize chronic compassion with a day on the first of every month, call it First Helping Day. Wouldn’t that kick off each of our months with a positive feel? It would probably do us all more good than saying “Rabbit, rabbit.”
