COVID-19 long haulers mourn loss of their previous lives

INDIANAPOLIS (WISH) — Physicians call them the long haulers.

They are the people who survive the coronavirus but end up experiencing long-term complications including signs of heart disease, diabetes and kidney problems. 

News 8 spoke with Dr. Heather Servaty-Seib, associate department head and professor in counseling psychology at Purdue University, about how patients can cope with a life they may never get back. 

Gillis: We know there’s been a lot of loss and a lot of grief in terms of COVID-19 and I’d like to speak to two topics. First there are the people who’ve lost loved ones and then there those who have survived–the long haulers–that don’t know whether they will get the life they once had back. Because we’re starting to learn…or it’s very likely that there are long term complications of the virus. So, first would you speak about bereavement in terms of family members who’ve lost a loved one?

Servaty-Seib: Yes. Grief is very different from sadness and from what we often hear, from what we often experience in terms of societal messages. As society we tend to think very narrowly about what grief must or should look like when really it’s actually very unique and very specific to each person. We often hear that grief moves in stages and actually what the research indicates and what we know in my field today is that it’s much more complex. It’s much more dynamic. It tends not to move in sort of a linear step wise kind of way. It’s very unique for each individual person. Even thinking about grief being equal to sadness is really not a great fit because we know that grief is emotional. Even emotions that are not sadness. It’s cognitive. It’s physical. It’s social. It’s spiritual. It’s all of those elements of how we function and it affects really all of those levels. And then it affects each person uniquely and individually within their particular context. Within their particular cultural background. Their particular communities. 

There’s a lot of variability and I think it’s really important for people to hear that their grief will be very unique to them and messages that indicate a very narrow or specific expression of grief are actually quite problematic. They can lead people to judge their own experience when their own experience is quite natural for who they are. 

Gillis: Can give an example of someone you’ve spoken to and explain further the uniqueness of their grieving process? 

Servaty-Seib: Absolutely. So, if we think about individuals who tend to be more cognitive or more physiological in their grief…so we might have someone who focuses on very much what the loved one’s life meant and works very much to make sense of that life in a cognitive sort of way. 

We also have individuals who grieve often actively. I think about a father who’s toddler died and kept a special rock in his pocket every day and that was a really important connection to his child who died. But he wasn’t talking about it. He wasn’t emoting about it, but he was very much focused on grief and very much focused on his child who died. 

Gillis: And you mentioned that everyone’s grieving process is different and that it doesn’t necessarily come in specific stages in terms of what the research says. Can you elaborate a little bit more on that? Because it is so unique to people. 

Servaty-Seib: Yes, absolutely. So, when we think about grief, rather than thinking about it as a stepwise sort of stage process…we really want to think about death as not an event, but really a life-changing experience. Oftentimes grievers will absolutely consider their life before the death in contrast to their life after the death. When we experience the death of someone really close to us and it can really shatter the way we view how the world works. How we make sense of who we are as people. And so this whole idea of making sense of or reconstructing an understanding of ourselves and reconstructing how the world works is a much more accurate way of thinking about grief and how as individuals we almost tend to live in stories and that when we’re grieving we need to kind of rewrite our story moving forward.

We have to rewrite the outlines that we have for those future chapters, which is much more unique. It captures the idiosyncratic nature of grief in thinking about it through processes rather than thinking about it as a particular stepwise process.

Gillis: We’ve talked about this father having a rock in his pocket that just reminded him…or the example of having a rock in his pocket. But are there unhealthy ways to grieve?

Servaty-Seib: From my perspective, the challenge is the individual’s experience in their grief are often more caused by society than they are caused by an individual grieving in any sort of problematic way. My understanding and my belief that our society and in actually many cultures–although there are many that are better than we are in the U.S.–create problems for grieving. They provide messages of judgement in a way that really makes them think they aren’t doing it correctly. They really internalize this. That then complicates their grief. Even more if they were able to experience something that was fitting or natural for them. 

I think there are certain situations where individuals may have preexisting conditions, sort of challenges related to relationships where when someone very significant in their life dies those complications can then be connected very much to their grief. 

To me, grief by its very nature is normative. It’s a natural response to a loss and so when there are individuals who experience grief…that is a catalyst for depression or is a catalyst for PTSD (post-traumatic stress disorder). Those things can happen. Grief and death losses for those mental health kinds of conditions…in general is quite normative. It is a natural response. I think when people talk about a lost one in the first person. 

There is more processing that needs to be done about writing the story and about the need to rewrite that story. There can be that holding on to the past and holding on to what was and that really does require the need to take in the experience and the reality of the death and then being able to rewrite again that future story.

Those are important factors to consider. But again, grief is normative. But a death loss can be a catalyst for other kinds of conditions. 

We can’t skip it. Grief is something people really need to experience. It’s very natural, but it’s also very unique. Sometimes–to some individuals–someone who looks like they are skipping it they really just may be expressing their grief in a very different way. Right? We have narrowly defined grief as talking and expressing and crying and emoting. And the research indicates…not at all are those pieces necessary or required for individuals to grieve effectively. 

Many times individuals will grieve in very active, cognitive and outward sort of ways that don’t tend to look like grief expressions that society might expect and oftentimes individuals don’t believe they are expressions of grief. So, oftentimes people say I haven’t grieved or I never grieved or I’m not grieving correctly. Then we get down to more of the specific elements like look at this fundraiser that you did for your loved one. That was an absolute expression of grief in a way that we would call altruistic instrumental grief rather than intuitive grief. There are different patterns of expression and I think that’s very normalizing and very important for grievers to hear there is no one right way. 

Gillis: And I wanted to circle back in terms of what you were talking about in terms of PTSD. We’re seeing a lot of…new statistics have come in terms of PTSD and COVID-19 survivors…these sort of long haulers who are grieving this life they had and may not get back. Because we can also grieve a job loss, a relationship. We can be just as affected by these things. So, what about these grieving COVID-19 patients are experiencing life now that they know might never be the same. 

Servaty-Seib: A significant part of what I do is what we call “non-death” losses. Right? Those losses that are very much a part of our daily life from micro to macro sort of losses and you really are talking about grieving of the way of being. A way of moving and functioning in the world and one of the things that comes to mind for me in terms of that is it can be really helpful to identify all of the losses that are part of that kind of situation.

Sometimes people are overreacting if they think about it as just one loss. But if they really identify all of the parts of their life that are different and all of the losses–rather than being a process that brings them down. It can be a process that really is comforting and provides insight. Normalizing it in a way in connection with the depth of what they are experiencing. 

Many changes…most life changes involve both losses and gains as a piece of them. I can’t say what the gains would be here because the primary focus here initially would be the losses that were a part of this kind of shifting from one sort of lifestyle…one sort of way of being to another. There are many sorts of losses and I do believe it is a grieving process and recognizing and acknowledging the grief process can also be quite helpful. How is it then, that I reimagine my life and the way I will move in the world? How do I make sense of this new way of being in the world?

Going back to the assumptions about how things would be and knowing that they can’t be the same. But they could perhaps still be possible elements, productivity and continued story that really matters even though it’s not the same story. 

Gillis: And last thoughts. What would like to tell people who are suffering and grieving?

Servaty-Seib: Although at one point it may sound discouraging…grief doesn’t really end. I think one of my favorite quotes is from a great philosopher of our time: Grief never ends. It changes shape. To me, the message is also quite powerful. It’s not, again, an event. We are different in our grief than we were before and that can be really empowering to know that grief is actually a reflection of love and attachment.

So, as we grieve it’s because of that love and attachment that that grief continues. Just because someone dies, it doesn’t mean we stop loving them and so our grief doesn’t end either. We move to a place where we can function where we can move and be in the world. I often have grievers and I’ve heard grievers say to me I have shifted from a place where my grief no longer owns me to where I own my grief and I think that’s really what we’re hoping for. Right? For people to be in a place where they own their grief. They often say you can’t define me by my grief, but if you don’t understand my grief you can’t know me.

News 8’s medical reporter, Dr. Mary Elizabeth Gillis, D.Ed., is a classically trained medical physiologist and biobehavioral research scientist. She has been a health, medical and science reporter for over 5 years. Her work has been featured in national media outlets. You can follow her on Instagram @reportergillis and Facebook @DrMaryGillis.