This week on the Caregiver Chronicles, we’re branching out a little bit! We’ve had a great time speaking with Meg Hall, a social worker at Maine Medical who focuses on supporting cystic fibrosis families in both the child and adult clinics. Meg has had the unique experience of being the connector between the families and the healthcare system, and joined us this week to tell us all about why she loves her job.
N: Thank you so much for taking the time to do this interview, Meg! We’re excited to learn a bit about what it’s like for you to work in the CF clinic. You have a pretty cool position - you're really there to support the families. To start off, we’d love to hear - what's your favorite part about your job?
M: I love getting to know the patients. That’s probably what drives me on a daily basis and gives me the most energy and good vibes overall – the patient and family interaction. I came to CF from more of a community mental health background, where you didn’t really get to grow along with the patients. I’ve been here [at Maine Medical] almost 5 years, so I’ve met families when their child was first diagnosed, and now those kids are 4, almost 5. It’s amazing to see those developmental stages, work with families, and help kids to transition from teenage to adulthood. I feel like it’s a family. That aspect of seeing the ups and the downs and being with them, as much as they want us to be, during those times is pretty cool.
Every time someone has a great success or something really positive happens for one of our patients, I get so much from that. I love it when kids go to college. We have a kiddo who recently got into the National Honor Society…I love hearing about that stuff. CF is a part of their lives, it’s not who they are, so it’s great to get to know families in a way that goes beyond their medical diagnosis. The patient component is probably my absolute favorite part.
The other thing that I really enjoy is working bigger projects in the clinic, trying to figure out how to make our clinic better and how we can work as a team to make improvements.
"CF is part of their lives - it's not who they are."
Social work is always a little bit in the background, and I feel like the credit should never be ours – it’s the families. We’re just there to help them along the way, but they’re leading it.
N: That’s a great segue to our next question! Tell us a bit about how you work together with families to help things go smoothly outside of the clinic, in their daily lives.
M: What I try to do more than anything is just listen and validate. If people have frustrations, or they’re just having a bad day, I try to give them the opportunity to put that somewhere.
When I see the patients and families, I always say that my office is a space where you can just put everything – hopefully we can problem-solve a little bit, but at the very least it’s helpful to just have a place to put the things that you’re thinking about, so they’re not hanging out in your brain or body. I try to create a place where people can share what’s going on in their lives authentically – if it’s money things, or a kiddo who’s having some trouble in school, I want them to feel that I’m there to support them and help them find a way to make things feel better.
We’re here to do the best we can to take the stress off of peoples’ shoulders. I tell families I’m always here, you can always call me – never hesitate to reach out if you need to talk. I don’t have all the answers – I have folks I can reach out to who can help with things like insurance, which gets a bit complicated - but I’m always here and it’s okay to ask me for anything. And it’s okay to share that you’re having a rough time.
I also think it’s really important to celebrate successes, both those that happen as part of CF but also wins in their daily lives. It’s important to realize that there’s more going on in their lives outside of the clinic.
I don’t know what it’s like to have CF – I have worked with a lot of families living with CF, but I’ll never have that full experience. I try to understand, as best as I can, the things that are needed on a daily basis to keep their kids healthy and themselves healthy. I try to understand, and then I meet them where they’re at.
N: What would you tell families who don’t have ready access to a social worker at their clinic?
M: Well, for CF, all clinics are supposed to have a social worker, although I know that we’re very lucky that our clinic has really championed and integrated us.
The good news is that anyone can be that sounding board. Some people at our clinic may identify me as the person that they can go to and identify with – but others will go to a specific nurse. It doesn’t have to be dictated by position. Who do they have a really good relationships with? It might be one of the nurses, it could be a physical therapist, it could be a doctor – who does the family really connect with?
In the absence of an assigned person to that role, I would encourage the family to reach out and find those folks – although I know it can be challenging to become comfortable with that. Just find the people that they find comfortable with – and some of that is just gut instinct. You’ll just want to find your person, whatever their position in the clinic.
N: That’s great advice. On a slightly different note - I'm sure your job is never boring! Can you share some of your favorite stories from work - funny, inspirational, crazy, you name it!
M: It’s funny – it’s not anything big really, it’s just the little stuff – you celebrate the successes and you’re there when things are rough.
We had a patient who went off to college recently, and is having the most amazing college experience, and is doing so well in so many ways. That’s something that I just love – when kids are feeling successful and good and excited – and are becoming adults!
I have one patient that just has a really good sense of humor, and every time I see him, we just have a good banter back and forth – because his sense of humor is very sarcastic, but he’s really fun to engage in that way. He probably likes to see if he can get a little rise out of me, but I know that it’s coming from a place where he’s just a silly guy, and that’s how he is.
The more immediate gratifying things are when we can work with a pharmacy where a patient can get what they need without having to pay too much money. That’s something that we like to do – if we can find a way to put money back in your pocket, you can use those funds to do something fun. We have a great pharmacy that we work with to help relieve families of that burden – and that’s huge. You can see the immediate impact of helping a family, because the financial issues can be very stressful! If I can help families with that, I can breathe a little better because I know they’re not sitting there worrying about it.
On a lighter note - I have a squirrel dress that I like to wear somedays when I see a few of the younger patients. They just really like to see it, and it allows me to be a little funky – it’s fun.
Outside of social work, I’ve been heavily involved in dance for a long time, so it’s fun to me to talk to kids who are into dance or performing arts – we can connect on that level. With one kid, we did the nae-nae when she was in the hospital! I try to have a good sense of humor and make kids laugh when it’s appropriate.
N: (Laughs) It honestly sounds like you have a great time with your job. I’m sure you’ve also grown and learned a lot personally, as well.
M: Well coming into a hospital environment from more of a mental health background, I definitely had to learn all about CF! It was hugely important to learn about the diagnosis, about the treatment regimen, about what patients had to do every day to keep themselves healthy. I need to understand all of that so I can best support people. I’ve definitely learned a ton about CF and the medical world in general.
"It was hugely important to learn about the diagnosis, about the treatment regimen, about what patients had to do every day to keep themselves healthy."
Also, as I said before, having that longer relationship with families in the CF clinic is a totally different kind of world. I think I’ve learned how to navigate a lot in terms of different developmental stages, and particularly I try to learn how best to support the adolescent population – they’re in a place of transition and independence, and that can be super challenging when you add in a medical need. I don’t think I previously had to think as much about that transition period as you move toward adulthood. I’m still figuring all of that out. It’s always a topic every year at our [North American CF] conference – it’s something where there’s always room to grow.
N: If you could give some advice to parents just starting out on the journey of raising a child who has a chronic condition, what would you tell them?
M: I always tell our families to reach out. Reach out, ask questions, we’re here. I don’t want to say that they shouldn’t be afraid to do that – because I can’t imagine, I’m not the parent of a child who has been recently diagnosed with a chronic condition – but I do offer that up. No question is too big or too small. If you need to ask a question or you need something, we’re here to hear it and help.
I think it’s also really important – for any parent, but especially when you’re dealing with a chronic condition- to take time for yourselves as individuals and couples. Nurture yourself as well. It can be really easy to be fully absorbed by everything that goes into having a baby and having a child with a chronic illness, and it’s very easy to forget to take time for yourselves. It can be hard to think about sometimes, but if it’s possible, it’s a good thing to do.
Try not to live in isolation - try to connect. CF particularly is a made more isolating because of the infection control protocol, but when there are ways to connect with other families going through the same thing, that can be great.
I also think that everyone’s instinct is to go and look things up online, and I think there is a lot of informative stuff, but there is also stuff that’s not as helpful. We recommend that families go to the CF Foundation website, because we know where that information is coming from. On the flip-side, though, people are curious, so it’s hard to resist that.
Finally, I’m a big fan of fitting CF into one’s life as opposed to fitting one’s life into CF. And that’s why I love it when kids do 50 billion things and CF is just one thing that they do, so that they can do everything else.
N: Thanks Meg, this has been a pleasure! Is there anything else that you would like to add?
M: When I started about 5 years ago at Maine Med, I was serendipitously put with the CF clinic – and it’s become my passion. And that’s for a multitude of reasons – it’s because of our clinics, our families. I feel like it’s a gift for me that I get to work with them. I want to be the best that I can every day walking into work, and be the best that I can be for them. I hope they feel the same way! (laughs) Just kidding.
I feel very fortunate to work with the CF clinic and families, and the worldwide CF community. I get to go to this conference every year where I meet other people who share this passion for working with the CF world – it’s a tremendous community that I get to be a part of.
I also have to add that I love working as part of a dedicated, passionate team - they're the best co-workers ever. They certainly have led me to love working within CF as much as I do.
I hope to be able to work within the CF world for as long as I can! Our families are pretty incredible.