MS diagnosis and trauma – the unspoken shadow to chronic conditions

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This is a trigger warning. In today's episode, we will be discussing topics that may be upsetting for some people. If you need support, reach out to Lifeline or Beyond Blue with more details in our show notes.

This is the MS Boost. The stuff you need to know from the people who know it.

Jess: So welcome to the MS Boost. So today, Jodi and I, we are speaking with Katie Willard Varant, who is a psychotherapist and we're talking today about trauma and diagnosis. The diagnosis of MS is something that can stay with someone for years. I know that both Jodi and I have spoken to people who can remember, even if they were diagnosed 15 years ago, they can remember that exact moment in time, what was said, what was going on, because it's such a pivotal moment in someone's life.

Jodi: Yeah, I don't know anyone who doesn't remember their exact day and time.

Jess: Absolutely. So, Katie, how can a diagnosis of a chronic condition like MS be traumatic or cause trauma for people?

Katie: You know, I think that for many people illness is so outside of the norm. Even though we know many people are ill, most of us will get ill at some point during our lives. Culturally, it's still so far outside the norm that I think hearing that diagnosis immediately makes people feel othered, a sense of being on the outside of normalcy and with a real fear of what will happen as a result of this diagnosis.

Jess: And how can that initial maybe traumatic event for someone, how can that really play out even in the months and years past their diagnosis? Like, how does that look for someone in their everyday life?

Katie: Sure. I think it plays out for many people with chronic illness with fear about going back to the hospital or the doctor, even if it's for a checkup.

There's even driving past the hospital or the doctor's office. For many people, there's a sense of, “oh, my body feels funny. My heart's beating fast. I don't like this.” And it can help to connect that to say, oh, my body is remembering being in that doctor's office, getting this terrible news, the treatments that I have been through there, etc. etc.

And also, the identity that one now has. There's a name, for some people that can be very relieving. Oftentimes when people are diagnosed, it's not out of the blue, there's been symptoms that maybe people say, well, it could be this. It could be that, maybe it's nothing. For many people it's a long time to diagnosis.

So sometimes there can be a sense of relief, but also a sense of a death sentence, if you will. A sense of, wow, this really is something that I didn't want to have happen. It's real. It's here. So, coming to terms with that identity, I think is a lengthy process. And for something like MS that ebbs, flows, waxes, wanes, I think it's a lifelong process because things are changing all the time. So, who am I with this disease, is a constant question.

Jodi: Do you think, Katie, that it's recognised a lot as a trauma? Like, I don't remember ever talking about the diagnosis being a trauma until more recently. Do you think it's something that's changed?

Katie: It's interesting, you know, I write a column about chronic illness and my column on trauma and chronic illness is one of the most read, downloaded columns, it really struck a nerve with people. People wrote in to say that they were feeling that there was an explanation for what was going on in their body to understand the panic, the dissociation, the inability to think clearly the things that were happening to have those described as, oh, these are trauma responses felt very much a bullseye for many people.

I do think it's being talked about more now, and I think it's really important for people to be seeing that there's no shame in having a trauma response to pain. It’s a very natural sequelae often, and it's very treatable, trauma is very treatable. But the first step to treating it, of course, is to recognise like, Oh, I think I'm having a traumatic response to my illness, my diagnosis etcetera.

Jess: And that's such a good point, Jodi, because you're so right. Like, I don't think it's been until literally the last few years that now trauma and grief in relation to our health is really being spoken about because it can have such an impact.

And Katie, what do you think about, maybe when people, they've got a diagnosis and they're expressing, these feelings of trauma and grief and loss, and people are unintentionally invalidating them by saying, well, you know, at least you're young and, you know, you look healthy. Like, does that play a role in almost perpetuating someone's trauma even unintentionally?

Katie: Very much so, because I think a component of trauma that we know that when something awful happens, to have the something awful be validated as, yes, this is something to which you're going to have a reaction, this is objectively a really hard thing to get through, there's an immediate relaxation.

The body says, “oh, they get it, I'm safe, I can explore these feelings.” But when people say, “well, you know, you're okay, you're young, you're not dead. Other people have it worse.” I think there's a sense of clenching in the body of, oh God, it's not safe to even express this, something's wrong with me. My feelings are not valid. And that perpetuates the trauma that kind of snowballs everything.

Jodi: Do you think that there's varying degrees of trauma and what are the factors that for some people it's more traumatic than others, do you think?

Katie: You know, everybody comes to illness with their personal history, and we know that trauma begets trauma.

I think that's a really important point, and I'm not, this is not to say that people having a traumatic reaction to their illness that, you know, they had a terrible childhood or something. That's not what I'm saying. But I am saying that people who have unresolved relational trauma, and let's face it, all of us have hard things happen to us.

But for people who've had continuously hard things happen to them since childhood, they are more susceptible to a full-blown traumatic response. I just, I want people to hold that in mind that if there is what some are saying, well, is this an overreaction to your illness? I'd question what's causing this? What else inside you makes you feel that you're not going to get through this? You're not sturdy. This will kill you.

There's often a history there that's worthy of exploring. Traumas call up old traumas. So, I think history is number one.

Social support is another one. Financial support. People who have resources, social capital, financial capital, you know, those are some things they've got going for them when they're facing an illness like MS.

People that don't have those things, that's tougher on them. That's going to create a whole different set of circumstances.

I think for people to not judge what their feelings are, but to be curious about them is really important. You know, there's such a censor of, oh, I shouldn't be reacting like this, or something's wrong with me. And I think to step back and say, but I am, I have these feelings, I wonder what that's about. It's really important.

Jodi: Yeah, I think another thing for MS was that there was often delays to the diagnosis and part of that delay was invalidation of symptoms, particularly for women.

Katie: Absolutely

Jodi: And we've recently talked about, some medical gaslighting along the way, but I found that people who have that cumulative stuff tended to sort of have this sense of more frustration and anger when they even came to the time of diagnosis, and look in retrospect I can see now after many years that, it heightened the trauma and I wished that as a nurse I had more opportunity to recognise that and use a trauma informed approach.

So, what could people ask for in that time to get some help? And what can we do as healthcare professionals, but mostly what people can ask for, really.

Katie: I think that what people can ask for, it's so dependent on how healthcare professionals present, because I think that what healthcare professionals can do is to believe people, to believe people's suffering. Right? That to believe even if tests are inconclusive, you know, tests are inconclusive sometimes, that happens. But to believe that, to be able to say with humility, I don't know what's going on, but I believe you are suffering.

I think that can make a world of difference for somebody. It's hard to ask patients to be open about what they need in an environment where health care professionals are not believing them. I think when a patient feels believed I don't know what's causing this, but I can see that you're really suffering. That's extremely helpful.

Jess: Absolutely. And I think that's such a great point because how can something like trauma really impact on someone engaging in their long-term management of their condition, or even in, interacting with their healthcare professionals, especially if they're coming from that background of maybe not feeling safe and supported?

Katie: It's a terrific question. And the research shows us that there are indeed real effects that affect people's ability to get health care and ability to take care of themselves. We know that dissociation is often a component of the trauma response. That can, you know, result in people not remembering to take their medications, saying, well, maybe I'll call tomorrow for that appointment that I'm supposed to get.

So, kind of literally just kind of floating away from their body and the care it needs and being overwhelmed saying, yeah, I can't really do this, right? Other times it can result in a hyper anxiety. I see this a lot and it's understandable, of course. People being very hyper anxious about their care, about any symptoms that come along.

And again, both things, both ends of that, the sort of, I'm not going to think about this, versus I'm going to think about this all the time, make a lot of sense. And I think for healthcare professionals to be mindful of that and to gently and understandingly help people to get more of a middle ground.

In a way, both of those sides of the same coin are about not trusting that care is going to help. Right? Either I have to be hyper vigilant because I don't trust that anybody else is going to be, I can't trust anybody else to look after me or why would I take my medicine? What? It's not going to do anything anyway.

So, there's a real lack of trust in each of those poles. And I think medical professionals too, we often, we don't deserve trust just by virtue of being a medical professional. We don't, and I think in a, you know, managed care makes this complicated too when there's not the time, but we have to earn trust by our demeanour, by our manner.

And there's lots of reasons and lots of people's stories in their background where they would come in and say, I don't trust you. Why would I trust you? So, it's a big part of the relationship, especially when someone's has a chronic illness and they're going to have a long-term relationship, I always think it's really important to find providers that you really can trust. It's essential.

Jodi: And not easy. And more the fault of the system than the person.

Katie: Not easy. Nope.

Jodi: The systems don't make it easy to trust either, unfortunately.

Katie: Absolutely, yeah. The systems do not make it easy cause this is our body. It's not like, a car mechanic. We need to feel understood. We need to feel that we're, we're real-life people with real life feelings about what's happening to us.

Jess: it's interesting when we were, discussing this topic, I kept thinking of that really classic cliched saying, you know, “what doesn't kill you makes you stronger” and it's essentially saying that, you know, from something negative, something good can happen or there's a potential positive to that. So, is that what post traumatic growth is? Can you explain that concept?

Katie: I really love the concept of post traumatic growth and I believe in it. I see it every day with my, the brave people that I treat. However, the saying, what doesn't kill you makes you stronger, it feels like that's not the whole truth. What doesn't kill you almost kills you and hurts like hell and something good can come of it.

Both things are true and I think that the good that can come of it can only happen when we really grasp the other part of, “I've lost a lot, I would not take this again, this really stinks”, I think to acknowledge that and to say, and with the mess of this, I've tried to bloom where I'm planted. That's fantastic.

But most people I know would not, say, yeah, I'm really glad that happened to me. I'm a better person. If you gave them the choice, they'd say, I'd like to be the worse person without the illness please. And that's understandable.

But as for what post traumatic growth is, I think it is a rich acceptance of loss, right? We don't do well in our culture with talking about loss, with accepting loss. We do everything we can to push it away and not talk about it. And I think that people that live with chronic illness and are working on these things, there is a deep a radical acceptance of loss, of not controlling the things that we can't control, and lots of really good things can come out of that.

Jodi: I'm thinking back of my years in the clinic and talking to people after diagnosis and when we talked about getting some help, most people just said, “no, I don't need it. I'll be all right.” And I always said, “you need it, trust me, you'll need it, it's a good idea.”

But, you know, at what point do you think people should reach out for help? Is there anything that they should be looking for to say, hey, this trauma is really negatively impacting me.

Katie: Yeah, I think sometimes people around the patient will point it out.

A spouse might say, you know, wow, you're just really inward, you're not as communicative. I miss you. Where'd you go? And, the patient might realize, wow, I have been really inside my own thoughts. I haven't wanted to do much. I've been pretty preoccupied. You know, a friend might say, you seem really anxious. So, kind of listening to other people, but also checking in with yourself, you know, I think that's a good thing about therapy. It really trains you and encourages you to do that. But to notice like, I think life could be more than what it is. I think anytime you say that's a good time to think, yeah, I'm going to get some help. I'd like to talk about that and think about that. I'd like for life to be more than it is right now.

Jodi: And what might it look like for people who get stuck and for the people who don't get help? What do you see as the long-term consequences of that?

Katie: I see a lot of isolation. That's the biggest one that I see, cause I think people that, either pole the people that don't take care of themselves, people around them get very frustrated and say, I don't understand this, you know, why aren't you taking care of yourself? You're doing this to yourself. And of course, that's not true and it's very complicated, but there's a pulling away there.

And then the people that are hyper focused on health, their friends and family might say, “Oh God, she's such a downer. That's all she talks about.”

So, to me, I think trauma heals in community. And when I see isolation, and some of that, I don't mean to say like, Oh, it's all the patient's fault at all. Sometimes support systems need education about how to stay connected but I think untreated trauma typically leads to a person that's very, very isolated.

Jodi: Yeah. And certainly, something to be aware of and that recognition that it is untreated trauma and that I think we kind of associate with the worse the diagnosis, the more trauma, but it's not necessarily those two that relate to each other, it's much more like you mentioned about people's stories and the trauma that's gone before and how important that is to help people recognise that.

What might be some symptoms that people could see in themselves if they were experiencing really unhealthy trauma?

Katie: I always ask people when they come in and I'm assessing for trauma This is gonna sound very simple, but I think it's really profound is, are you in your body? And sometimes they look at me, what are you talking about?

But I want to know, do you feel like you're living like yourself, are you in your body? Do you feel like you're present inside. You can feel your, you know, your heart, your, the weight of your, seat on the chair. Are you in your body? You're kind of floating around outside of it. And the people that are dissociating will, they'll know immediately and say, no, I'm not in my body at all.

So, I think that's a really important clue. Sometimes disturbed sleep, nightmares, inability to sleep, uptick in anxiety and depression. I mean, let's face it, a big loss like chronic illness, it is an event that's going to rearrange everything.

We were talking about climate issues before we hopped on here to hurricanes, tornadoes, diagnosis is really a hurricane, tornado, flood, fire in one's life.

It matters, right? So, I think it's really important to understand that there will be sort of symptoms and it's when it's too much, to always get help. When it feels like the symptoms are not abating, the support structures I have around me, I'm feeling like I need a little bit more, get help.

Jess: I loved that mention of extreme weather and things like that, cause it's so true when you think about it, when you say someone's lived through one of the worst bushfires here in Australia, instantly we know and we validate that person has lived through a trauma.

But when you talk about diagnosis, it's like, oh, okay, well that must've sucked for you, but you don't sort of view it in the same lens.

But now that you make those comparisons…

Katie: I think it's an apt comparison because. Look what happens when you do live through a flood, fire, etc. So much is wiped out, right? My past is wiped out. I've lost so much. I've lost who I was, what I was.I don't know what the future is going to bring. What the heck is that going to look like?

I've got to go through all this administrative stuff to try to put together a new life. And I'm really close to the idea of mortality. I could have died, like, yes, that comparison really does work. A diagnosis like MS is indeed an event of that magnitude.

Jess: absolutely. And then knowing when the flood's going to come back, especially with MS and the ebb and flow of symptoms, it's such a good analogy.

So, in sort of summary, I guess, what would your main strategy or bit of advice be to someone who maybe feels like either they have unresolved trauma from their diagnosis or isn't even sure how to verbalise that they feel, you know, those sorts of feelings? What would you say to that person?

Katie: I would definitely say to go to a therapist whose trauma informed. Right? Again, we do heal trauma. It's a relational endeavor. We do heal trauma with another person, with other people. So, finding someone who has that vocabulary and can kind of help you break it down, like, oh, these feelings that I'm feeling or not feeling in my body are related to X, Y, and Z.

Putting a narrative to it is extraordinarily helpful. Grieving the loss is extraordinarily helpful, grieving the losses, I should say, because there are many in illness like MS. And then finding a way to reintegrate to the community, whatever that looks like, to not be isolated, to be able to integrate the new identity with the illness and find people to relate with groups to relate with ways to feel like there's meaning and connection and with this new identity.

Jodi: yeah. I love the fact that you've mentioned a few times, traumatic healing and calling it, you know, naming it, giving it words, giving it meaning and saying, this was a trauma for me and it can heal as well too and so it's such a optimistic, hopeful thing.

Katie: Yeah, and that's the beauty of our brains, right? Like, the trauma response is our brains and our nervous system going, ah, too much overload, no, no, no, no, no, right? It does that, but our brains are such that we can retrain that, we can retrain our nervous system, we can calm it down and say, you know, yes, that was hard, and we survived and we're going to keep surviving.

And I think that's what good trauma therapy does is this is optimistic because our brains are, so amazing. But we can find a way, we can find ways to survive and thrive.

Jess: Absolutely. Well, it has been so lovely speaking with you again, Katie, and that's..

Katie: Likewise.

Jess: You know, such great, tips and information for people. So, we really appreciate your time.

Katie: Thank you for having me on. I appreciate it.

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