The Hidden Cost of “Faking Being Well” With Allison Fine

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About IBD Podcast Episode 212

Living with a chronic condition places an invisible strain on friendships, marriages, and family dynamics, especially when patients feel the need to mask symptoms. Allison Fine, MSW, LICSW, founder and executive director of the Center for Chronic Illness, discusses breaking the cycle of emotional performance, navigating caregiver burnout, and processing ongoing grief. They explore how support groups are vital in chronic illness and how communication protects long-term relationships.

Center for Chronic Illness 2nd Annual Chronic Illness Symposium (April 16–17, 2027): https://www.thecenterforchronicillness.org/chronic-illness-symposium

Find Allison Fine, MSW, LICSW at:

 

Find The Center for Chronic Illness at:

 

Find Amber J Tresca at:

 

Find Mac Cooney (mix, sound design, and theme music) at:

 

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

What you’ll learn:

  • Why chronic illness affects friendships, family relationships, and romantic connections
  • Learning to talk about symptoms, limitations, and the need for support
  • How to manage canceled plans, guilt, and social isolation
  • Finding understanding through peer communities and support groups
  • Recognizing caregiver fatigue and supporting the well-being of care partners
  • Creating safe, welcoming, professionally moderated support groups
  • The emotional impact of chronic illness, including grief, acceptance, and adapting to change
  • Providing education and community resources for people with chronic illness and their caregivers
  • Making chronic illness support and education accessible to patients and health care professionals

Chapters:

  • [00:04] — Amber introduces guest Allison Fine, a clinical social worker and founder of the Center for Chronic Illness.
  • [01:21] — Allison explains how her interest in psychology and social justice led her to social work.
  • [04:04] — Allison reflects on and how personal illness experience deepened her work.
  • [06:56] — Amber and Allison discuss masking symptoms, the difficulty of asking for help, and help.
  • [10:37] — Guilt, cancelling plans, educating loved ones, and connecting with peers.
  • [14:09] — Caregiver burnout, grief, and the importance of checking in and communication.
  • [19:37] — Allison shares her motivation for founding the Center for Chronic Illness.
  • [25:15] — Allison explains how facilitators help create welcoming, safe support groups.
  • [33:24] — Allison outlines programs from the Center for Chronic Illness, including educational programs and the upcoming symposium.
  • [38:29] — Allison shares what she loves about Seattle.
  • [41:33] — Allison tells listeners where to find the Center for Chronic Illness online and on social media.
  • [42:26] — Amber thanks Allison, encourages listeners to explore the show notes, and shares podcast credits.

Transcript

[Amber Tresca]: I’m Amber Tresca, and this is About IBD. I was diagnosed with ulcerative colitis as a teen and had J-pouch surgery 10 years later. Now, I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen. On About IBD, you’ll get real talk on symptoms, treatment, and life with IBD, straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way.

My guest is Allison Fine. Allison is a clinical social worker and the founder and executive director of the Center for Chronic Illness, a nonprofit dedicated to supporting people living with chronic illness through support, education, and community. With more than 19 years of experience spanning private practice, nonprofits, hospitals, and senior living communities, Allison has dedicated her career to supporting the emotional well-being of individuals facing chronic health challenges. Allison earned her Master of Social Work degree from the University of Kansas and is a licensed clinical social worker in Washington State. Allison also lives with chronic vestibular migraines and has lived with Crohn’s disease since age 11.

Allison, welcome to About IBD.

[Allison Fine, MSW, LICSW]: Thank you so much, Amber. I’m so thrilled to be here.

[Amber Tresca]: Perfect. I’m so excited to talk to you. Our topic today is how to build and navigate relationships while living with a chronic or rare illness. And one of the reasons why we’re talking about this is because some of us, namely some of us that are speaking right now, may find it difficult to maintain friendships, family ties, and even romantic relationships while we’re coping with everything that an illness throws at us. So, we all know that support groups and our chronic illness communities online can be super helpful, but it’s not always easy or natural to enter into those relationships either. So, that’s our topic and I am just going to jump right in by asking Allison first to get started learning more about your journey. I always find it so interesting when people live with a chronic illness and then go into healthcare because then that means that it you it’s all day, you never get to leave it. So, I want to learn about how you found your way to social work and then what led you to specialize in the rare and chronic illness space.

[Allison Fine, MSW, LICSW]: Thanks, Amber. So, you know, I I got my bachelor’s degree in psychology and I think I always knew I wanted to be a therapist. And, you know, as I started looking at graduate programs, I was applying to, you know, master’s of counseling programs, looking at the PhD clinical psych programs, and then kind of discovered social work. And I was really interested at the time in working with couples, actually. I thought I wanted to be a marriage counselor, couples therapist. and when I was looking at the social work program, it’s very much focused on like social justice and, you know, working with disadvantaged populations. And I just felt like I was somebody, you know, young and enthusiastic about the field and wanted to help and make a difference. And so when I came across social work, I felt like, given the types of populations that social workers often work with, I felt like I could make the biggest difference there.

[Amber Tresca]: Yeah, that makes a lot of sense. And I always find it interesting when people find their way to this type of work, and I think it’s because of your experiences sometimes living with a chronic illness. But then again, you never get to you never get to leave it. So I feel like you have to have a real passion for doing this work.

[Allison Fine, MSW, LICSW]: Yeah, it was interesting because I was diagnosed with Crohn’s disease at such a young age, but then I went into like an 18-year period of remission. And so when I finished graduate school and was looking for jobs, you know, ended up taking a position working with folks with multiple sclerosis at a small nonprofit here in Seattle. And felt like, you know, my own personal experience of living with illness was kind of not even on the radar at the time because I had been well for so many years. and so working with folks with multiple sclerosis, I learned actually probably all I wanted to know about, you know, this journey of chronic illness and how that impacts loved ones and, you know, caregivers, patients, you know, everybody that’s involved. And so I think, you know, it wasn’t until I had my own chronic illness, Crohn’s disease flare in my late 20s, you know, my first one as an adult, that it was kind of like okay, you know, I’m a compassionate person, I, you know, have studied this work, you know, I’m doing the work, but there was something about wow, I’m now experiencing this journey myself. That was just very eye-opening and allowed me to work with my patients at the time, I think, in a a deeper way and in a different way.

[Amber Tresca]: Yeah, and I wonder, you brought up something that that I think about sometimes is that when we are in remission or feeling well, you know, whatever that might look like, you tend to feel a little bit of survivor’s guilt is kind of a strong term, but it’s kind of like the one that we have for it, you know, you almost feel like, do I even belong in this community anymore? So I like I’m sorry that you ended up having another flare-up that sort of like, you know, brought that connection home for you, but it kind of sounds a little bit like that’s what you were thinking about at the time.

[Allison Fine, MSW, LICSW]: Yeah, you know, and honestly my Crohn’s has very much been that way over the years. I, you know, once I had that flare-up and then that was treated and, you know, I’m still undergoing active treatment but I am also now back in remission and have been for many years. So I think that, you know, it wasn’t actually until I started dealing with chronic vestibular migraines that I was like you know, now I really get it. Like now I’m definitely a part of the chronic illness community. But yeah, there certainly is, yeah, a feeling of like, yeah, like the guilt you’re talking about that, you know like… Well, I live with autoimmune disease too, but I’m well most of the time and can live my life in the way I want to, whereas a lot of people can’t do that with many different diagnoses and some people can’t do that with IBD. So, yeah. Yeah, definitely experience that feeling a bit.

[Amber Tresca]: Yeah, it leads to very complicated emotions. although I’m happy for anyone who achieves remission or feels well, please go live your life. because something that we do a lot in the IBD community, and I think in most all chronic illness communities something that we have in common is the idea of faking being well. We just get through the demands of the day no matter what it costs us because we want so much to just live our lives and get on with it and not have to focus on illness so much. So, I’m wondering sort of in your in your more professional capacity, how you see this as a performance? How you see this affecting people who are living with chronic illnesses?

[Allison Fine, MSW, LICSW]: I think in a number of ways, you know, I think first of all, you know, if we’re not being true to how we’re really feeling day to day and how, you know, our IBD is impacting us, then it’s really difficult to ask for what we need or acknowledge that we might need help in certain ways. And so especially with, you know, loved ones around you, partners, you know, I’ve seen a lot of folks where they don’t ask for help because they don’t want to admit that they might need it and then they don’t get the help that they need and also their partners then are surprised later on when it’s like well, I thought you were doing fine. and you know, I thought that you felt okay. And when did this come about? You know, and so it becomes a situation where you’re like withholding truth from people that you care about and and from yourself, right? And so we’re not living kind of the most honest versions of who we are, you know, to the core.

[Amber Tresca]: That’s a really good point that I don’t think I’ve really discussed very much on this show is the idea that if you’re doing such a good job as an actor and nobody is really noticing what is going on with you, because often it is the people that are closest to us who will be like, “Hey, seems like you’re a little more tired lately,” or “It seems like you’ve been in the bathroom a little bit more lately. Are you doing okay?” But if you’re covering all of that up, then you’re just getting worse and worse and you’re not asking for help, you’re not receiving help, and then if you do get to a critical point, then everyone is just thrown off track. So, I feel like that gives us yet another reason to try to be more forthcoming, especially with the people around us about what’s happening to us.

[Allison Fine, MSW, LICSW]: Yeah, absolutely. And I I think that’s a really good point that you made too. Like oftentimes it’s not until we’re in medical crisis that we do reach out for help, and I think things can be done before we get to that point and maybe crises can even be avoided if we’re willing to kind of go to a place of acceptance and adaptability. I talk about the grieving process a lot in my work with chronic illness and you know, it’s acceptance isn’t about giving in to the diagnosis or giving up. And I think a lot of people might think of it in that way. it’s more about giving yourself the chance to be adaptable and to ask for help when you need it because you’re in a place of, yeah, I deal with this diagnosis and sometimes it’s really tough and so these are the things that help me get through that, you know, and it allows people to kind of shift to that space versus just being angry or sad or and maybe in denial about it.

[Amber Tresca]: Right. and something that happens to people, I think especially in the IBD space, but it’s probably really common across all chronic illnesses and and rare diseases as well, is that sometimes we might get a reputation as being a little flaky because we have to cancel plans at the last minute. Sometimes we can’t go to events and sometimes in IBD, it’s things like if there’s nothing there that we can eat, if there’s not reliable bathroom access or if there’s only like port-a-potties or something, or there’s too far to walk and the, you know, joint pains are acting up. Like we might not be able to do the things that we want to do because, you know, when you come to that acceptance and you accept your capacity these are things that happen. But I think sometimes people around us get frustrated with us, the people that are, you know, don’t understand chronic illness on that level. And then we feel guilty and then it just becomes a whole thing.

So, I’m wondering if you have some thoughts about how can people navigate this? Are there are there some strategies that we can avoid feeling guilty and then also avoid becoming isolated because of these issues?

[Allison Fine, MSW, LICSW]: Yeah, absolutely. I think education is the first thing that comes to mind, both for you know, those who are patients, but also those who are loved ones and caregivers. You know, taking your partner to your doctor’s appointments, you know, sending, I know at least in the MS community, I know this exists. I’m not sure about the Crohn’s and Colitis community, but there are like day camps for kids to be able to go and understand what their parents are dealing with. And, you know, I think those types of programs are really helpful because it gives family members insight into what life with IBD is like, right? And then the other piece I think is finding people in your life that understand and that are compassionate and empathetic toward your situation. And maybe it’s because they’re also dealing with IBD or some other chronic diagnosis, and so they get that it’s difficult to make plans or that sometimes you have to cancel. And so being able to have those kinds of conversations with people that feel safe for you, I think is incredibly important. And if you don’t have those people in your life that feel safe to have those kinds of relationships and conversations with, then figure out how do you meet those people. And sometimes it’s in online groups, you know, or online communities that exist. you know, support groups, which, you know, I know we’ll talk a bit more about later, is just a great resource for people that are going to also get where you’re coming from and maybe validate like yeah. it’s, you know, awful that so and so got frustrated with you when you had to cancel those plans because that’s not within your control and, you know, here’s how I, you know, do this with my family and explain to them when I’m not able to do something. And so you can get kind of guidance and tips in that way as well from from your peers, you know, from folks who really get it. Where it can feel very isolating to live with chronic illness, but it doesn’t necessarily have to feel that way because there are thousands of us out there that, you know, are are wanting to build connection with other people who get it.

[Amber Tresca]: Yeah, totally true. There is lots of community to be found once you kind of get over that hurdle of understanding that you need it and then going out and finding it in the way that that feels best to you. And I, so I’m going to lean into your experience like working with couples a little bit here because I think that a lot of us might lean on one person more than others and that might be a spouse or a partner. Could be, you know, a best friend or maybe a sibling maybe a parent. And I think the thing though that happens with romantic partners is that you end up with this caregiver dynamic. And that may might not be what everybody, you know, signed up for in the beginning. So, you know, I want to know more about like caregiver fatigue and like how can we help people when they’re feeling that or how can we sort of head that off in the first place if possible.

[Allison Fine, MSW, LICSW]: Yeah, it’s a great question. You know, compassion fatigue and caregiver burnout, these are so common for caregivers to experience. I think one of the things that we’ve noticed in the CCI community is that folks don’t always identify as caregivers first of all. So, you know, we had a caregivers support group we were doing for a while and we just weren’t getting any traction. And I was like, where where are all the caregivers? You know, there is certainly a need for this, you know, shown in in the research and and in, you know, real life, right? So, I thought, okay, what do we do to pull folks in? and we ended up changing the name of the group to Supported Loved Ones with Chronic Illness. doing that has made a huge difference in the attendance that we’ve seen and there’s something about, you know, if you’re a partner or a spouse, you know, and maybe it’s the wedding vows potentially or some other, you know, if you’re not married, some other sort of couple agreement that you, you know, make with one another, but there’s a sense of like you take care of one another in sickness and in health, right? And so I think there is a feeling of like I’m just supposed to do these things as a partner without recognizing the burden that can happen from that. and so it can manifest in other ways than like, you know, fights between people and, you know, couples or, you know, resistance to helping or, you know, or just other emotional reactions that come up. And and I know we mentioned grief earlier, you know, a partner is grieving the loss of who their loved one was as the person living with IBD is also grieving the losses that they’ve experienced as a result of their diagnosis. And so sometimes all those emotions don’t match up, you know, like just because you’re feeling one way doesn’t mean your partner is feeling that way. and so I think that’s a piece of it too, like even just taking a moment to check in with one another and maybe it’s once a week, you know, sometimes getting on the calendar is necessary to make sure it happens. And I think this is tough for couples that don’t already have that kind of emotional dialogue going on in their relationships, but I think it’s really necessary just to say like, hey, I’ve had a really rough week and you’ve been doing a lot for me. How are you holding up, you know, and how can we carve out some time for you to do something for yourself and to make sure that you’re taking care of you, you know. and I know that sounds so much easier than it is to have that conversation with a loved one, but I think it’s a piece of being able to make sure that you’re still taking care of one another because oftentimes, like you’re saying, that role reversal or even like that caregiver parent, you know, child type role can come into play and it’s not what people signed up for, exactly what you said. Like it’s not who you thought your partner in life was going to be, right? and so a lot of people end up doing things for loved ones that they never fathomed were going to be, you know, a part of that journey. but that doesn’t mean it’s not workable. It just means being really honest with each other about where you’re at, how you’re feeling. You know, if there’s particularly rough time period, you know, oftentimes if somebody, you know, living with IBD is no longer able to work, for example, the care partner, they’re not only providing care, but then they’re maybe also the breadwinner, right? and so they’re carrying the burden financially for the household and then they’re also having to do extra things, right? that maybe a well person would have an easier time kind of equaling out those roles. So, yeah, there’s just there’s so much there and so I think yeah, it has to start with communication and conversation around how are we, how are we doing this week? How are we doing today? you know, and then go from there to try to solve problems as they come up.

[Amber Tresca]: Coming up. Allison tells us why it’s so important to have moderated support groups. Allison, let’s talk about the Center for Chronic Illness. I know it’s not easy to start a non-profit. It’s not easy to sustain it. And especially now it is frankly more difficult to get funding. And so I’m wondering what prompted you to go into the into the non-profit space in the first place?

[Allison Fine, MSW, LICSW]: Yeah, absolutely. I mean, again, as a social worker, I think there’s always a part of me that wants to do social justice work and and fight for people who who need a voice for them, honestly. And so, I think that was always kind of floating in the background. And then back in 2009, I started my counseling practice and I was working with a lot of folks with both multiple sclerosis as well as folks with IBD and other chronic illnesses. and, you know, I think I just started seeing patterns, you know, that despite the diagnosis, that folks were dealing emotionally with some of the same challenges across the board.

Yes. And so I felt like, okay, you know, they can come see me, we can talk about depression and anxiety and kind of treat those problems, we can talk about grief and loss, how it’s impacting, you know, their loved ones, these sorts of things, but I felt like there’s got to be a solution for the isolation, you know, because them coming into my office to see me and then me sending them home to their same isolated environment didn’t fix anything. you know, it it continued the same problem that they came in for, right? you know, I think when we feel isolated, things like depression and anxiety are so much more common, right? Because we just we’re just up here in our heads all the time and we don’t have other people to spend time with, to bounce things off of. so I think, yeah, that was a big part of it was just feeling like I wanted to create a space where people could come together and be witness to other people’s journeys of living with chronic illness, right? And so I think that was probably the biggest part. and then of course there was a small part of me who had started my counseling practice years before that, you know, it’s just a little bit entrepreneurial and so I wanted like to start the next thing. Like, what’s the next thing going to be? And so I spent quite a bit of time thinking about what that was going to look like and doing research and having focus groups with trusted colleagues and trying to figure out, okay, what what is this going to be? And then finally, I think it was in 2014. and I just had this moment of like it’s gonna be a center for chronic illness, you know, and it just kind of came to me and then spent more time like, ooh, is that really what it’s gonna be or what would that look like? Does that already exist, you know? but yeah, that was kind of what I landed on and so yeah, that’s the journey we’ve been on.

[Amber Tresca]: You know, that’s so impressive because I think a few of the non-profits that I’ve seen spring up yeah, I don’t think they were doing any of that. That’s really impressive. and I agree there’s definitely a need. And like when we come together and I’ve seen this at times when we’ve come together more in sort of like the political sort of legislative space, when we come together, the different chronic illness and rare disease communities and find the commonality and the problems that we’re looking to solve that we’re all experiencing, like it’s so much more powerful because there are, you know, unfortunately, there are so many of us out there and we don’t need to be in our in our own silos. Like when we come together, there are there’s a lot of overlap there, which I’m sure you discovered when you were doing your due diligence.

[Allison Fine, MSW, LICSW]: Yeah, absolutely. And and so many needs, you know. I think initially I was like my goodness. like we’ve got to do all of this. We’ve got to offer emotional support, but also case management and transportation and financial assistance and, you know, it’s like I I had a focus group with a lovely group of social work colleagues and so all these things are coming up, of course, and my my husband who’s who’s lovely and supportive grounded me back to like, what is most important to you? And I think what it came down to for me is that emotional support component. I wanted people to feel supported and validated and like they weren’t alone. and I think, you know, being able to talk with others who get it allows people to not feel like they’re alone in that journey. And so, that was kind of where my heart was, even though all these other things are important and maybe someday somebody will be doing them. but yeah, I think for the moment, the emotional support component is still really so key to my own journey and and also the journey for so many others.

[Amber Tresca]: Yeah, I think that’s right. If you if you try to address all of the gaps that are there, like you’ll address none of them, you know, like so I think that’s right that you you have to hone, which I know is hard because all these other things are in your peripheral and they come up. but I think that’s right to focus on one thing. And so I want to hear about the programming that you have at the Center for Chronic Illness because we talked a little bit about this, but you offer some some support groups and you point out on the website that they are moderated by licensed mental health professionals. And I I want to learn about why that’s a priority for you.

[Allison Fine, MSW, LICSW]: Yeah, great question. Yeah, so CCI offers over 20 different online virtual support support groups that are free of cost and that also meet ongoing. And so I think some of the reasons for that design. So pre-COVID, we were actually doing some support groups in person in the greater Seattle area. And then when COVID hit, and actually before COVID hit started in 2018, we were already offering web-based support groups and had a a more national audience. but of course once COVID happened, that only grew, you know, the need for folks living with medical conditions that were even more vulnerable to a pandemic, you know, were even more isolated and even more impacted by that. And so we just saw huge growth, exponential growth during the COVID years and we, yeah, just continued expanding during that time. And so that was really exciting and and then the piece about mental health providers, you know, I think some of that came from my own personal experience of joining a support group. So again in my late 20s, went through an IBD flare for my first time as an adult. And as a young social worker who was trying to be taking care of myself while I was taking care of other people, I thought, okay, I should go to a support group. And so I did. You know, the local, you know, IBD group that was there, I went to one of their meetings and unfortunately, I just had a terrible experience. You know, and I think a piece of that was I was a new member to the group and there was no kind of structure built in to welcome new people. And so immediately, you’re already isolated in your illness and then you’re isolated because nobody’s like hey, what’s your name? Welcome. you know, there’s there’s none of that just like hosting going on. And then the other piece was that folks were there and they were talking about things that I hadn’t yet experienced in my own journey. And so that was terrifying for me, you know, as a late 20s, you know, young woman who wanted to kind who wanted to kind of live well with chronic illness and I was like my goodness, like this is so much more real than I expected. And so I think, yeah, it was just it was a lot. It was also a group of men, which, you know, as a woman and being the only female in a group of men is, you know, a different dynamic. And so yeah, there were just a few things about it that I thought, okay, like I’m not going to return here. And also when I started thinking about CCI, I was like, well, how how do we do it differently so that nobody has the experience that I had.

So we have a lot of clinical social workers facilitating our groups who work with folks with chronic illness and other capacities. And so I try to bring people in that either have personal experience, which many of them do, you know, of living with chronic illness, but also have the professional experience of working with some sort of population that is impacted by chronic illness. And then on top of that, a lot of them already had support group facilitation, group facilitation skills too.

And I think the other thing that comes to mind with that as well is when you’re in a group of people, as we all know, there are many things that can go wrong, right? And so, you know, you can feel as I felt like not welcomed, not a part of the collective. You know, you can feel like what’s being talked about is is traumatizing or scary, can bring up a lot of fear. You can just feel like I just I don’t belong here. I’m not a part my identity is not the same as the other people’s identities in the group, and so I think having a professional facilitator, at least at CCI, has allowed for us to help create those safe spaces for people to be a part of. And that’s one of the things that people say most often about our groups is that they felt so like welcomed and a part of the group immediately and that there was a cohesiveness that they haven’t seen in other online spaces. And, you know, and so I I credit the professional facilitators to that. I think they’re really doing a fantastic job of just making sure that Everybody has a chance to talk, you know, paying attention to the emotional reactions in the space. If something difficult is being talked about, acknowledging that and figuring out how do we move the group along and how do we not create toxic positivity, but also end on a note that leaves folks feeling more hopeful, hopefully, than when they came into the space. And so yeah, there’s just a lot of dynamics that I think social workers, you know, and counselors are just so excellent at creating. so yeah, that’s a big part of why I felt like I wanted professionals to be a part of that.

[Amber Tresca]: Thank you for explaining all of that. It is extremely important that people understand it, that facilitation is a skill and it is important. And sometimes, and we see this in online spaces all of the time, is that the folks that are in those spaces are the ones that are most needing the help. Not everybody gets to that point, especially now with IBD, we have such great treatments. Not everybody, you know, is going to going to need the same level of treatment or the same same level of support, and it can be really scary, you know. Like I I can only I don’t even know what it must be like to be a newly diagnosed person in 2026 and to go online and read all these things because it must just be terrifying. And it’s something that I’m aware of on this show all of the time as I ask people for their stories, is that I’m asking them to tell me and everyone who opens up this show about some of the worst things that have ever happened to them. And so, that has become a part of the podcasting journey as well, and why I often have pre-calls with my guests is to talk about that first so that they understand how how they may feel after we go through this process. But I always do. I always try to lift it up at the end. So, we have that in common.

[Allison Fine, MSW, LICSW]: It’s we see this all the time at CCI too, that folks will reach out to ask about our programs or how to get connected, and they’ll say things like, I’ve needed this for a really long time, or I’ve never been a part of a support group, what does that entail? And I feel a little nervous about it. And I’m an introvert. How do I, you know, enter a group space and get what I need out of that? Or I’m an empath. How do I enter a group space and, you know, not be the helper like I am maybe in other parts of my life? And so there’s there’s a braveness that comes along with even reaching out and being willing to join something like that. And so I always try to acknowledge that to folks because it’s hard to reach out and ask for help, especially to strangers or a stranger organization. And so I think that’s the first step is even just like acknowledging that the help might be needed, right? Or that it might be useful to you. and and yeah, and then if we can get people in the door, we want to make them feel safe for that reason as well because for a lot of them it’s taken a lot to get them to that point.

[Amber Tresca]: hundred percent Allison, I know the Center for Chronic Illness also has some educational opportunities because that’s one of your core tenets as well. Can you talk about some of the programming that you have that helps educate people living with chronic illness and care partners?

[Allison Fine, MSW, LICSW]: Yeah, absolutely. So we do a lot of, you know, usually a few each year, but a lot of one-off webinars on various topics as they relate to chronic illness. And so during the pandemic, we did one on like coping during a pandemic and the mental health aspects of living with chronic illness. we’ve also done ones that are around like Medicaid and advocacy and things like that. and then we have a couple coming up this fall. one is going to be on applying for social security disability and the other one will be on some of the upcoming Medicaid changes that are going to be happening as a result of some of the legislation that was passed last year I believe.

[Amber Tresca]: Wow. those are super important and I’m really going to encourage people to sign up for those and engage with it because wow. Okay. So, I’ll make sure that I put all that information in the show notes. Let’s talk about some of the other things that you have going on. you have your second annual chronic illness symposium coming up. I also know How much work goes into these things. So, this is coming up in 2027, April 16th and 17th are the dates for that. This is not easy. So, congratulations. Congratulations on doing it three years in a row. Can you talk a little bit about this event who it’s for, what’s the programming like, and what you hope people take away from it?

[Allison Fine, MSW, LICSW]: Yeah, thank you so much. Yeah, it it is a lot of work. Yeah. The symposium is something that I have dreamed about for a really long time and had spreadsheets built out years ago of what I thought it was going to be. I actually used to speak at a lot of multiple sclerosis conferences and the feeling of like being in a professional setting with others who do the work you do and care as much about the work that you’re all doing and there was something about that community feel that I really liked and wanted to create, you know, in in a completely different way for CCI. and so started dreaming years ago, but then finally, I think it was 2024, I kind of said to our board like, hey, I think we should do this thing that I’ve never talked about before. And so, you know, thankfully they were incredibly supportive and Yes. like this makes complete sense and you know, part of our mission is around support, but the other half of it is education. And so, wanted to create a space where people, an accessible space where people could come together and, you know, these might not be people that want to go to a support group either. And so it’s just another way that we can offer connection for folks that might look a lot different than what we’re doing in our support groups, but it’s still equally as needed. And and we certainly saw that at our 2025 symposium, we had almost 500 people attend virtually. it was an all virtual event again with accessibility in mind and wanted to, yeah, just give them the experience of feeling validated and again normalizing their experiences and then giving them tools and resources for being able to cope with living with all different types of chronic illness. We attendee wise, it was a lot of patients, but also a number of caregivers joined us. And then we actually had two learning tracks. So we had the patient caregiver track and then we had another track for both mental health providers and healthcare providers. And that was a much smaller part of the conference. we had already been doing some continuing education programming for mental health providers as an organization outside of the symposium and decided we wanted to try to grow that component of what we do as well. Again, with the interest in, you know, training providers and trauma-informed, you know, accessibility care for folks living with all types of chronic health conditions. So so yeah, the symposium is really open to anybody. There’s no no restriction on who can join us. If you’re somebody who has some connection to chronic illness, you’re welcome. We also partner with different organizations to offer like a virtual exhibitor hall and have sponsors for the symposium. So, partnering with companies and organizations as well to just kind of build a larger chronic illness community is really the goal.

[Amber Tresca]: I love that. it it is so much work and I just it it it makes me want to run away. I’m just like, I don’t know. So, so kudos to you for like bringing it to your board and being like, yes, let’s do this because it’s absolutely needed, but I’m not going to do it.

Okay, so we’ve been talking so much about your professional work and a little bit about your chronic illness journey. Like I said, I always like to end things on a higher note, and so I want to talk about something that has more to do with you personally. And it’s so funny because I was talking about it earlier today with somebody else about that I’ve never been to the northwest.

And so, what about the area that you’re in there is interesting? what do you like about it? does it rain as much as, you know, the movies make us think that it does? When people come to visit, is there something that you bring them that you bring them to see that they should see?

[Allison Fine, MSW, LICSW]: my goodness. So I actually grew up in the Midwest. So I was born in St. Louis, grew up in Omaha, Nebraska, went to school in Kansas. So I’m a Midwesterner at heart, but I’ve lived out here in Seattle for almost 20 years. It’s yeah, it’s the most beautiful place. I’ve traveled to a number of other countries and a lot of other places in the US and I just find it to be one of the most beautiful places. You know, even years after living here, I’ll be driving around just kind of in awe of the mountains in the distance or the lines of trees, you know, tall trees all around. And so there’s just a if you’re an appreciator of nature, there’s just a real beauty here that I certainly didn’t experience growing up in the Midwest. so that is definitely one thing that keeps me here. But yeah, when my husband actually built a whole spreadsheet of like things to do in the Pacific Northwest for when we had people visit because it was always such an adventure to figure out how are we going to fit everything in because there is just so much to do. one of my favorite things to take people to is the Pike Place Market. It was kind of one of my first experiences of being at a really large farmers market and you know, it also includes crafts and small businesses and you know, just such a community feel there that I really love. and very large bouquets of flowers for like fifteen dollars. so that that always blew me away. Yeah, when I first moved here, I was like, I am going to go there and buy flowers every week, which I don’t do, but I thought I thought that was going to be a thing though. but yeah, just it’s a really beautiful part of the country. If you’ve never been, definitely check it out. but yeah, there’s lots to do here, tons of great museums, tons of parks. If you’re outdoorsy, we’ve got mountains on every side of us. so yeah, plenty to do.

[Amber Tresca]: I hope to make it. I have never been to your part of the country. I’m a little afraid of going there and like loving it so much that like not wanting not wanting to leave. all right, Allison. Ugh, back to business. All right, so tell me how people can follow the Center for Chronic Illness. where are you on the web and where are you on social media?

[Allison Fine, MSW, LICSW]: Yeah, absolutely. So you can find us on our website which is www.thecenterforchronicillness.org or you can just type in chronic illness Seattle and we’ll probably pop up somewhere. we also exist on social media. We are on Instagram so our profile there as well as on Facebook is Center for Chronic Illness. so pretty easy to find there. And then if you are a healthcare provider or somebody who’s professionally inclined, you can also find us on our LinkedIn company page. so yeah, we’re  in a lot of spaces online and we we love new followers, so check us out.

[Amber Tresca]: Perfect. Yes, I will encourage everyone to follow along and I’ll put all that information in the show notes. And Allison, I don’t have a spreadsheet. I don’t have a spreadsheet of things that people should see when they come to New England. But now I’m inspired to do that because brilliant. Okay. And if I ever make it up, okay, I’m gonna I’m gonna look, I’m gonna put it into the universe like I will make it one day. One day I will make it to the Pacific Northwest and then I’ll be asking you for your husband’s spreadsheet. But until then, thank you so very much for all of this work that you’re doing for the community. I am so impressed with how thoughtful you are about it. I think that’s really important and intentional. And you’re covering some gaps that we know are there. They’re very hard to fill, so I appreciate you taking those on. And then I also appreciate you coming and speaking with me today and taking me through some of these things. You laid out a lot of really important points that I think people needed to hear. So thank you so much for that.

[Allison Fine, MSW, LICSW]: Amber, thank you so much for having me. Obviously, as somebody living with Crohn’s, when I found your IBD podcast, I I was thrilled to meet you and yeah, just really appreciate the opportunity to come on and talk about the Center for Chronic Illness as well.

[Amber Tresca]: Hey super listener. Check the show notes to find links and information about the topics discussed in this episode. Plus, get a written transcript and much more on my website, aboutibd.com. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app. Reviews and ratings help me grow this show and bring you more great content. Thanks for listening. And remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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