I Already Know a Lot About You
On advocates, allies, and the different ways of showing up in a patient community
Much of my week is spent logging into meetings with people I have never met. Some of those meetings are in the rare epilepsy community, where I am the mother of Charlie, who has Lennox-Gastaut syndrome, a rare and devastating form of epilepsy. Others are in the amyotrophic lateral sclerosis (ALS) community, where I work as a researcher. I also volunteer in other disease domains, both rare and not rare. Each time a new group of volunteers appears on my screen, whether it is an advisory board, a steering committee, or a brand new working group, I already know a lot about the people in it before anyone has said a word.
I know that each of them saw an injustice and wanted to correct it. I know that each of them has a skill that could help, often one that is expensive and that a small organization might not otherwise be able to come by. I know that they understand this about themselves and decided to give it away.
I often say that through having Charlie I have seen all the bad and all the good there is in the world. Without him I would not have seen all of the bad, but I definitely would not have seen all of the good. A large share of that good has come from people whose way of helping is easy to miss, and this post is about them.
Help that is easy to see
Over the years people have shown up for my family in ways anyone would recognize as generosity. They have sent meals, arranged respite care so that I could have a night off, delivered equipment, sat at a hospital bedside, raised money, and checked in on my husband and kids while I was away on a business trip. I have benefited from all of these, I am grateful for every one, and nothing in this post is meant to take anything away from them.
This kind of help is visible, since you can see the meal on the porch and the total on the fundraising page, and so the thank-you comes naturally.
Help that looks like a job
Because I work in research, I know what a research or clinical job requires. I know what a person in one of those jobs has to do to get paid and to get promoted, which means I can also tell when someone is doing far more than that.
I think of the person from one of Charlie's former teaching teams who agreed to work with a neuropsychologist I had hired, and who took great care to answer a long set of questions that are hard to answer for a child like Charlie. That was time in the day that could have gone to paid work. I think of the neurologists I see at local epilepsy events and patient conferences, and the scientists who could speak on the biggest stages in their field and still give up a weekend to travel to a small advocacy meeting. I think of the attorneys who sit on nonprofit boards because a friend of a friend has a child with the disease. None of them had to be there, and staying home would probably not have hurt their careers.
When I log into a meeting full of professionals who are there as volunteers, I see people pulling up to the house with a chest full of treasure. Their expertise is the most valuable thing they have to give, which is why they were asked, and they are giving it. For many of them, purely in terms of financial value, it is a far bigger gift than a gift card for dinner delivery.
I see Charlie's neurologist this way: he could have chosen an easier path in medicine, and instead he spends his days caring for children with severe epilepsy that has no cure yet, and talking with parents who are beside themselves with grief and worry. He is a person, and I know it affects him when Charlie is not doing well. All of those extra calls and emails, those community events I see him attend - that is a meal delivered to our family, and his version of sitting with the kids so that I can go out for a coffee.
The same is true of the scientists I work with, who are some of the smartest people I have ever met. They are the smartest people I have ever even heard about. Far smarter than I will ever be. They could be doing almost anything, for more money and with far less frustration and sadness, and they chose to work against the epilepsy and ALS clocks.
When I meet an early career scientist who is interested in epilepsy or neurodegenerative disease, I already know a lot about that person too.
The question of career benefit
I have heard the criticism that professionals come to patient events because it is good for their careers (funding, publications), and sometimes that is true. Affiliation with a patient group can lead to funding and opportunity, especially early in a career. I encourage advocacy groups to say so plainly when they recruit early career advisors, because someone with only a few years of clinical research experience can offer a group a great deal and deserves a line on a curriculum vitae (CV) in return.
I would only ask that we slow down and think about what the criticism implies. A researcher who wants a grant to study a rare disease has chosen a field that is rarely a path to wealth for an academic. There is no grant that they will ever win with a small patient group that will replace the riches they could have made had they taken a more lucrative career path in the first place. Some benefit to the helper does not cancel the gift, and most of what I watch these volunteers do goes well beyond anything a promotion or funding committee will ever count.
How appreciation can go missing
In small ways and large ones, I have seen patient communities hold their professional allies at arm's length, usually without meaning to. The work can look like something the person is paid to do, so the thank-you that goes to other volunteers does not reach them. They are left off the more personal messages that go around the group, and they are not quite treated as part of the informal team. Their grief at a setback or a loss goes unacknowledged, as though a decline in someone they have cared for or studied for years would not touch them.
These volunteers are capable adults who can handle being overlooked, and most would never mention it. I am writing about it anyway because I think noticing it could be healing for all of us.
I want to be clear that I am not describing my own experience. The groups I work with treat me like a member of the family, and I chose them for that reason. Being treated that way is part of how I know what it looks like, and part of why I notice when someone else is on the outside.
Why we keep score
I understand where the distance comes from, and I do not think it comes from a bad place. Many of us came to advocacy because something deeply unfair happened to us or to someone we love. Once you have learned how unfair the world can be, through a disease like ALS or epilepsy, it is very hard to stop measuring what is fair. We keep track of who has done enough, who has real lived experience, and who is here for the right reasons, because we are trying to protect ourselves from being hurt again.
Sometimes that turns into frustration with the very researchers we support, because a treatment did not come in time for someone we love. Seeing a scientist enjoy a coffee or a day off can feel like proof that they do not understand the urgency. I know that feeling, and I think it is a normal human response to what many of us have lived through. I wish every epilepsy doctor and researcher could work around the clock, but because I am a scientist too, I know that they cannot.
What could change if we stopped keeping score
I cannot promise outcomes, but these are the changes I would expect, based on what I have seen in groups that already treat their professional volunteers as family:
Advisors stay longer and invite their colleagues, because people return to places where they feel they belong.
Early career researchers who feel welcomed are more likely to build their careers in our diseases, and our communities will need them for decades.
Families gain more people to celebrate with and to grieve with.
The energy that goes into deciding who belongs and who deserves credit can now be channeled into the work.
A community divided between people with lived experience and people who work on it transforms itself into one community with many ways of helping.
Small ways to show appreciation
None of this requires changing a partnership that is already working, and if your group already does these things, I hope you will read this list as recognition.
Thank professional volunteers in the same way and in the same places that you thank everyone else.
Include them in the personal messages: the birthday wishes, the hard news, the group photo.
When there is a loss or a setback, check on them too.
Tell them specifically what their expertise made possible.
Assume the best about why someone came.
Be glad when they rest.
A colleague once told me that work is my love language, and I think that is accurate. Teaching, advising, and helping people do the work they are trying to do is how I show love, especially for people who are trying to cure their own child's disease or make the most of their time after a diagnosis or a new disability. I believe the same is true of many of the professionals in our communities.
So if you are new to one of our groups, whether you arrived with a meal or with a skill, I already know a lot about you, and I am glad you are here.
