Vulnerability as an AYA Program Manager

I’ve thought about writing this article for weeks now. I’ve even attempted multiple drafts, all of which ultimately got deleted.  

The thing is, I’m not afraid to be bad at writing. I’m afraid of how what I am writing will be perceived.

Social workers are rigorously trained in maintaining personal boundaries, so it isn’t natural or comfortable for me AT ALL to focus on myself in this role. That’s not to say I don’t share aspects of my personal life with patients, because I do when it’s appropriate. It’s just that when it comes to processing the trauma, grief, and really big feelings that I often experience in my work I follow the ring theory (who knew it had a name!?). I support in, and dump out. I support in to patients and caregivers; and I dump out to other social workers, friends, family, my therapist, etc.

I’m also not trying to say that patients don’t see my feelings, because they have and they do. And actually, even in the midst of their own grief they often check on ME when I have to share hard news with them (makes my eyes water just thinking about it). I’m just saying that this whole sharing my experience as an oncology social worker/program manager is really out of my comfort zone… but I’m a big believer in vulnerability, and I try to practice what I preach. So here we are! 

I’ve never had cancer. I can’t live in those shoes or speak to what it’s like, and I don’t ever want to pretend to. My approach really is to just listen as much as is humanly possible, process/consolidate/organize all of it in my brain, and then use that collection of information to answer questions, to normalize experiences for other patients, and to just generally improve AYA care and programming. 

Now that we’ve got all of that out of the way – here is a VERY BRIEF summary of just a few of the lessons I’ve learned over 15 years of highs and lows in oncology. 

1. Gratitude is a practice, and its value cannot be overstated.

As all of you are acutely aware, your ENTIRE life can change in a matter of seconds. And being witness to that on a daily basis means that I get a daily reality check with a very clear message – instead of taking things for granted, or waiting until something is coming to an end to really appreciate it, appreciate it now. Be grateful now.

So every day I try to name two or three things that I’m grateful for (big, medium, small, even seemingly insignificant), whether it’s in my head, in a note on my phone, or in a legit paper bound gratitude journal. I forget sometimes, and I take breaks on occasion, but I always go back to it. Why? Because just when I start wondering if it really helps, the universe always shows up and tells me that it does.

Five years ago my dad (who I rely on more as an adult than I ever did as a kid) had a stroke and a heart attack, in the same year that I was grieving major losses at work and in my circle of friends (remember: not all major losses are deaths). I wasn’t in the headspace to practice gratitude most days, so I just put it aside for a while. Until one night when was feeling particularly terrible and wondered what good my gratitude journals were doing for me anyway. Curiosity got the best of me so I went back and read them, and y’all, it was transformative. I ugly cried.   

Don’t get me wrong, several things were hard to see. But ultimately, remembering all the things that WERE good reminded me of the things that were STILL good and of the things that could BE good in the future. And it gave me a path. It was a spotty gravel path in an unlit heavily wooded jungle, mind you, but it was something. And thus far, anytime I’ve had to go back looking for it again, it’s been there. It looks different every time, but I know it’s there.  

Now, please repeat after me: gratitude is NOT the same thing as toxic positivity. You can be grateful AND have bad days, be grateful AND have hard feelings, be grateful AND want things to be different, and heck – you can even be a grateful person who feels ungrateful! You also absolutely do NOT have to be grateful for the challenge, the test, or whatever metaphor people choose to call cancer. 

2. Too much of a good thing can be a bad thing, so awareness of where you are on the spectrum of that thing is KEY. 

I just talked about the benefits of gratitude and how significantly it’s impacted my life. And I swear to you, every single bit of it is true.

What’s ALSO true is that sometimes, the more gratitude I feel for something, the more I want to hold on to it. And the more I want to hold on to it, the more scared/sad I get about the thought of it ever not being there. And then I find myself completely consumed by anticipatory anxiety.  

Example: A few weeks ago my air conditioning broke, and my dad came over to fix it. It was quick, easy, cheap, and really not a big deal. But I cried that night. And I often cry after I’ve spent time with him, or I think about the impact he’s had on my life. Why? Because my heart is full of gratitude for him that I constantly think about the day he won’t be around, and I grieve it, even though he’s still here. 

It’s a normal experience; I’m certainly not alone in it. But it’s hard! And it’s not something people talk about regularly. It’s definitely not what people would think is one of the most challenging parts of my job, but it is. (Knowing so many wonderful people who die too soon is right up there too, of course – but people always guess that one). 

As many of you already know, it can be hard to walk around with the knowledge of how truly fragile life is. In fact, the magnitude of it is rather crushing at times. Should we always be connected and feel it in full force? No. I don’t know that it would be possible to successfully function that way. Then should we always disconnect and avoid it entirely? Also no. Then we’d all be heartless robots. It’s a spectrum, and it’s really just important that we know where we are on that wide range so that we are better equipped to ask for what we need.  

3. You are the only one who truly knows what you need. 

There’s sometimes a little trial and error involved, and sometimes we need people to help us figure it out, but ultimately, it’s up to us.  

I remember my first patient death, and I remember how deeply it cut me. I had never been in that situation before so I didn’t know what I needed, but for some reason I expected my friends to. The dialogue in my head went something like this – “If they love me, they should know how to support me! They should know what I need!” But that is absolutely not the case, and it’s an expectation that will set everyone involved up for failure.  

My friends didn’t know how to support someone who works with children with cancer, or someone who sits at the bedside of sick children as they are dying! And even if my friends knew how to support someone else who does that, it doesn’t mean they knew how to support ME through that. Humans are complicated and unique, and so are our needs. 

So I had to think about it for myself. And what I ultimately came to realize (which is still true to this day) is that when I’m really struggling, as tempting as it is to crawl into a small dark hole, I actually tend to avoid being alone because that can easily get me stuck. What helps me the most is connection of some kind. Connection can mean anything from just sitting in the same room with someone while we each do our own individual thing (just their presence is enough), to going out for a drink and distraction with a group of people, to sitting on a porch swing pouring my heart out to a trusted friend. And usually through doing any one of those things, I find myself in a place where I feel ready to journal, which is where I process, and that REALLY helps me navigate rough waters. 

I haven’t even touched on the practical support that is needed sometimes, but I am sure y’all are more than familiar with that. The point is – what we need changes from minute to minute, person to person, situation to situation. So it is literally impossible for the people around us to accurately guess what we need. Sure, people will guess correctly sometimes. But when they get it wrong, it hurts enough that it usually just makes more sense to spend some time educating. 

Educating people about what we need and how we need it requires energy we don’t always have. But more often than not I’ve found that it’s worth expending that energy because then those people know how to help me efficiently and effectively recharge.

And speaking of what we need and what helps us cope… here’s one last little tidbit to leave you with.  

You can do ALL the therapy, have WONDERFUL support systems, and utilize all the BEST coping tools in the world, and things can still be hard and heavy and make your soul hurt. It’s not a character flaw to struggle or grieve, and if you find that you’re doing your best and it still isn’t working, you aren’t doing anything wrong. 

Keep showing up to therapy, keep leaning on those support systems, and keep using those coping tools (including medication if needed). Every single thing you do has an impact; sometimes it just takes a while to actually feel or see the benefit.  

I certainly don’t have all the answers, but I’m here to listen and learn and hopefully help others in the process.

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