Feeling sick, faking well – with psychotherapist Katie Willard VIrant

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders, past and present.

Jess: Hi everyone and welcome to the MS Boost. My name is Jess and today Jodi and I are speaking with Katie Willard Virant, who is a psychotherapist. Katie works with adults and children. Teens and children on a variety of issues, including loss and grief, life transitions, and living with chronic illness.

So, Katie is the author of a monthly blog for Psychology Today entitled Chronically Me, emotional Landscape of Chronic Illness. And it's actually how we came across Katie. Jodi and I both read an article that really resonated with us, which is called Feeling Sick, Faking Well. And it's just such a great article and I think certainly people living with MS may resonate with it as well.

And so, Katie, your article talks about the concept of wearing a costume of wellness for people who are living with a chronic illness. So much like costumes worn by kids. And you also go into how the pressure to be well is often due to society's expectations and the fear of being a burden. So, can you explain a little bit about that concept and where the idea for the article came from?

Katie: Sure. I remember writing the article and it was around Halloween time and was thinking about, you know, the decorations up and the kids coming and their costumes. And it made me think about how people living with chronic illness, well, everybody really, we all put on and take off various costumes, but there's a particular one that people with chronic illness are very handy about putting on and hopefully taking off sometimes, and that's the costume of faking wellness. And that costume can take many forms, including silence, being silent about what we're experiencing, about pain levels, about sleep, Symptoms about limitations can take the form of denial of saying, Oh, I'm fine, don't worry about me, everything's great. Can take the form of how we dress, how we perhaps put on makeup, do our hair ways that we want to indicate to the world that we're feeling well. And there's nothing wrong with that I always say we get to present our identity in the way that we want to, it ebbs, it flows, hopefully.

But my point in the article is that often people that are chronically ill feel a societal pressure. To put on this costume of wellness and that it bears thinking about.

Jess: Yeah, absolutely. We often hear the casual question, you know, how are you? And even when you're feeling absolutely terrible, that automatic response is usually fine, thanks. And I think that really ties into your article where you speak on those societal pressures. So how does that play a part in people feeling the pressure to have that façade of wellness?

Katie: I think it's very hard to be ill in our culture. Well, let me back up. It's very hard to be vulnerable in our culture. And illness is, of course, a manifestation of vulnerability, it's a lived experience of our bodies aren't working, quote, normally, or the way that we would like them to work. And as a consequence, you know, there are limitations, there are things that we can no longer do, there are ways we have to rearrange our lives.

And we don't talk about this a lot in our culture. There's a discomfort with loss, with grief, with things not being hunky dory. And I think that's the societal pressure, is that it's hard to go against that and to say, things aren't hunky dory things. Things are actually a little challenging right now.

Jess: Yeah, that's so true. And I think, you know, while you're speaking from an American point of view, I think it's a shared cultural pressure because certainly here in Australia, I think there is a tendency to view people who are seen as, you know, as whinges or when there's something always wrong to be really seen in a negative light. And no one wants to be seen that way.

Katie: Oh, absolutely. So many people that I work with have the experience of a lot of guilt and anxiety and shame around being thought of as a whiner, a burden, a person that's always complaining, a person that's always has something else going wrong. There's a real fear of being, you know, a negative Nancy. There are all kinds of terms that we use. And it's hard because when you live with chronic illness, pain, loss, limitation it is part of your daily life and hopefully there's also joy, silliness, lots of other emotions too, but it's really cutting off a part of ourselves when we live with chronic illness, not to claim that part, that by virtue of the illness, things can be challenging, often daily.

Jess: Right. Yeah. And so, one thing I noted in your article and, and from your experience is that you talk and focus on grief and loss, and obviously the impact of living with a chronic illness can be a big contributing factor.

Do you think that people may use this faking well? Almost as a way to avoid and not acknowledge those feelings of loss and grief that could come from living day to day with a chronic illness or condition.

Katie: Absolutely. My experience is, again, going back to the societal pressure, that because there's not a space in the larger culture to talk about this, to acknowledge this as part of all of our experiences as humans, we are all going to die one day. That is the done deal. But we don't, there's not a space to talk about that.

So, I think having that experience that, this is not something we talk about nice people don't acknowledge this. It makes sense then that there'd be an internal pressure, a sense of this is something that I really don't want to think about, have a hard time even putting words to, I'd rather just pretend it doesn't exist.

Jodi: I just wanted to ask you about in your article you talked about the negative effects of and the positive effects of that real sort of thinking positive then I'll feel positive and that the research indicates that that's not necessarily the way it goes.

I just wanted to ask you a little bit more about that because I thought that was really interesting.

Katie: Yeah. I've always really interested in the research around positive psychology because I certainly think mindset is important. But I think a false positive psychology, we know that that, is not beneficial, that it's very hard to keep denying, to say, I don't feel sad, I'm actually quite happy it's fine. That has ways of coming out. I see it in my office all the time, sometimes with manic defences, with people running around really not caring for themselves. It's so great, I don't need to rest. I don't need to see the doctor, I'm doing fine. Sometimes with depressions, I'm really sad and I don't know why I can't connect it to anything. When you kind of make the connection, maybe you are kind of sad because you're living with a chronic illness and we could talk about that.

Feelings that aren't felt, can they find a way to get expressed. And that's not to say that positive psychology isn't beneficial, it certainly is. It's got to be earned though. It's got to be a feeling of, for example, the old saying of, is the glass half full or half empty? It's both, right? It's half full and half empty, and I think people do better when both things can be acknowledged simultaneously.

Jess: Okay, right. And so, you mentioned that when things aren't expressed, they have a way of coming up in the body.

So how can this impact people and what does that look like in their everyday life?

Katie: I think there's a stress to it, especially if it's a costume that's put on defensively, I can't let people know that I'm ill. There's going to be a stress that goes along with that, and we know that stress, those stress hormones get going in our bodies, our muscles tighten, the cascade of effects from stress are not great for anybody and especially not great for people living with chronic illness.

So, I think being aware of that, of how does the way that I choose to present myself affect my stress level. Does this feel authentic to me? And, and there's lots of ways of being authentic. I'm not suggesting that the right way is to let it all hang out. The right way is the way that feels most comfortable to you, the individual, and that's going to be different for different people.

Some people feel a lot better if they get dressed, get made up, and it's not about protecting other, protecting themselves from other people's judgment. It's the way that they wish to present themselves to the world. That's fantastic. That's great.

But when we are driven by fear of judgment, I think stress levels rise and there, there is going to be, you know, sequelae to that that happened in the body.

Jodi: I think that fear of judgment that, you know, you saying that just really resonates with me. I'm like, yep, wow. You know, that sense of, if I present in a certain way and don't show up in a certain way, I'll be judged accordingly, and I think that also really impacts especially in the workplace, you know, how people show up in the workplace to say I might be judged for the work I'm doing and how I'm doing if I don't present in a certain way. What are your thoughts on that?

Katie: I think it's such a great point. I'm watching a show on television right now It's Danish. I really like these foreign shows on Netflix, but one thing I notice, it's a police show and the woman who runs the newspaper, she walks with a cane and I thought this is the greatest thing, this is not part of the plot point, there's nothing about her disability that we know about or need to know about, but the editor of the newspaper walks with a cane. I love that. I think that's fantastic. I think the more that we see that in media, the more that we can show up bravely as who we are to normalize that there's lots of different ways to show up professionally, that we can use aids that we need. We can you know, arrange our schedule the way that we need to take care of ourselves. There's something about this show that's giving me a lot of hope that, gee, that can happen.

Jess: Yeah, definitely. And so, if people are wanting to show a bit more of their authentic experience and feelings, but they're also still really, trapped by that societal expectation around their health, how can people begin to tip the balance in that direction if they've never taken that step or felt that they could?

Katie: It's a really good question, and I would say that there's lots of ways in, and for some people starting, if you think about the connections that you have in your life as sort of radiating circles, that there are those close connections right at the center.

For some people, they might say, you know, I don't tell my spouse or my sister or my good friend, I really could be a little more honest, I'm going to start there. I'm going to maybe throw out some test balloons and you know, be a little more authentic and see how that lands.

That may feel comfortable for some people, for some people, it's the opposite. And they're like, I don't want to start close in, I'm going to start at the outer ring, maybe I'll go to a museum and bring my mobility aid. Maybe I'll, you know, I'd prefer to see how it is with people that I don't know. But I think thinking about that, being intentional about it doesn't have to be all at once, but how can I move the needle even a little bit in a certain context and just try it on just see how it feels.

Jodi: How do you think a sense of safety impacts that.

Katie: I think it's huge It's huge. And I think that's something where a therapist can be really beneficial really talking through, because there are situations where it's not safe, and there are people with whom it is not safe, and it's really important to be discerning about that for, for one's own self-protection.

I think, the shame of that, the danger, the, the grief of that is when people have bad experiences, enough bad experiences that they generalize to, well, that's just not safe in general. By and large, that's not true, but it can be difficult finding safe spaces if you've not had that experience of being in a safe place.

So, I think therapy can be really helpful in terms of acknowledging how hard it is to step out of the shadows when you've not had the experience of being seen and validated and heard, but also helping people find those spaces and people that are safe.

Jodi: Yeah. How to look for the safety signals, it's so important.

Katie: Yeah, absolutely, absolutely.

Jodi: I loved your analogy of the circles, because sometimes the people around you isn't your safest space.

Katie: That's right.

Jodi: Sometimes your safer space is where nobody knows you are. And you can take off that costume.

Katie: That's absolutely true. I think that's a big grieving point for a lot of people when people realize or they, maybe have always known, but verbalize like, wow, the people around me really, they're not safe. And there's a lot of grief and loss and mourning that goes with it. But also, to really look at that often a motivation of, you know, I've got to find people who see me and validate me and hear me.

Jodi: And how important that is to get that inner circle into a safe space. And that's where, like I said, therapy can help so much to help you create that inner circle of safety around you to wear whatever costume you need to.

Jess: yeah, great point. And so, Katie, one question I was just thinking of, as we know with MS, the majority of people diagnosed are women and it's often around that time of having a family and children. Do you think for maybe women who feel that they need to fake being well, is sort of to hide it from their children, or to shield it from their children?

Do you think that that's a factor as well?

Katie: Yeah, I do. Absolutely it's such a hard question. I speak as someone living with chronic illness myself, I have Crohn's disease and I have an adult child and it's something I still struggle with of how much to reveal, how to show up for her in a way that's authentic, but also acknowledges that she's not my peer, that she’s, my daughter.

I wish I had a pat answer for this, I don't, I think that women who are in that position of parenting and living with a chronic illness, I really hope that they have a safe peer to talk to, whether that's a spouse, a partner, a friend, a family member. I think it's so important, and I always say, mothers know their children better than anyone, so I think that that getting that balance of what's being authentic, what's telling the truth, what's giving helpful information, and what's too much, is something that the mother on the ground is in a really good position to judge and they should trust themselves and their instinct and understand that it's a balance that shifts and changes all the time.

Jodi: That's great advice.

Jess: Yeah, that's such a good tip and you're so right. As mums, we absolutely know our kids the best.

So, Katie, if you had one top strategy or number one bit of advice for someone who's maybe really struggling with this, what would you say to them?

Katie: You know, it's interesting. I'm thinking about the patients that I've seen today even, and people coming in with chronic illness or presenting with other issues, a common thread through it all is, can I show up? Can I take up space in the world with X? Can I take up space in the world if I'm black? Can I take up space in the world if I'm gay? Can I take up space in the world if I'm chronically ill? So, I think that, like, understanding that that is an important question to grapple with. There's often an assumption, I can't take up space in the world because I'm chronically ill. I have to be very mindful of the space that I take up. I don't want to make people uncomfortable. I don't want to rock the boat.

I think challenging that notion, and asking yourself, can I take up a little bit more space? And after that, maybe a little bit more space. And if I'm not being able to able to take up space, what's getting in the way of that? And how could I change that? Watching people contract who they are because of chronic illness is really painful. It's sad to me because I think that you know, I think it's about 10 percent of the population that live with at least one chronic illness, probably more we're not an insignificant number of people. This is a part of normal life and normal experience and, the more that we can take up space, I think it's also advocacy work.

It's work for us, for our own happiness and wellbeing, but also advocacy work and helping people who are coming up behind us saying, yes, you may take up space. It's safe to be in the world living with chronic illness.

Jess: Yeah, absolutely, such a great point when you talk about that, and it sounds so important to Give yourself permission to take up spaces is what I took from that as well. So, thank you so much for your time, Katie. The article was such a great read, and we'll link it in our show notes for our listeners and it has been such a pleasure speaking with you.

Katie: Great, fantastic.

Jess: Thanks for listening to the MS Boost.

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