Michelle Irving talks autoimmune hepatitis, migraine and vertigo. Michelle also shares a lot about her spiritual and emotional experiences of illness, her focus on self-compassion, and how she’s used Greek mythology to build a map that makes sense of the chronic illness cycle.
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
First, I want to apologize for how erratic my release schedule has been so far in 2020. I know I have a lot of new listeners tuning in and I just want you to know that I’m usually way more consistent!
If you follow me on twitter or instagram, then you probably know that one of the reasons I’ve been so distracted is that I just gave a TEDx talk about chronic illness and the diagnostic experience. It’s basically 18 minutes of everything I wish I’d known when my body first went off the rails, and I hope it will become a good resource for explaining this whole mess to people who still have no context for the quagmire of chronic illness diagnosis.
The video of the talk won’t be available for a few months, but I did share the text over on Medium if you want to give it a read. You can find it by clicking the article called Disease Begins Before Diagnosis on my Medium profile at medium.com/@bennessb. And if you’re out of free reads on Medium, the link pinned to my twitter profile right now will get you past their paywall.
This week I’m talking to Michelle Irving about autoimmune hepatitis, migraine and vertigo. Michelle also shares a lot about her spiritual and emotional experiences of illness, her focus on self-compassion, and how she’s used Greek mythology to build a map that makes sense of the chronic illness cycle.
I also have a big content note for this episode, because early in the story Michelle describes the suicidal ideation that she experienced as a steroid side effect. It comes up twice in the first 20 minutes or so, and the second time she gives some details about what that ideation was like for her. But once that conversation is over it doesn’t come up again.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: Okay. Well, I like to start just by asking people how was your health as a kid?
Michelle: So my health was physically very well. I had migraines from about eight years old, which then led to one of the conditions that I now have in my late forties. I think in terms of environmentally, I had two parents who were mentally unwell, and that really significantly impacted on my wellbeing and the habits that I’ve adapted in order to just survive and cope with that process and how that’s formed my relationships.
Brianne: Yeah. Yeah. And that is such a… obviously like a big shaping factor for everybody. Obviously we spend so much time with our parents and our kids.
Michelle: Yeah, yeah. And our brains developing and responding to them. So I’m pretty clear that that has been, had impact in places on the physical conditions that I have.
Brianne: So I do like to try and at least start out chronologically. So you said at eight you started to get migraines, which I saw something recently talking about how most people who have migraines do actually, they start very young, but they aren’t necessarily identified immediately because young kids don’t always get their pain taken seriously, really.
Michelle: Yeah, my mother had migraines, so yeah, for me, I’m aware that it’s my body responding to overwhelm and the one way that you can step out of overwhelm is to… pretty much the body to take over the experience so that you actually lie down and rest.
Brianne: This stuff is all so complicated. Okay, so migraines at eight and then did you, did you start to develop any other health issues kind of gradually, or was there a moment? Or what happened?
Michelle: Yeah, so no, not at all. Um, not that I was aware of. What happened is that in my… the early thirties I had dark circles under my eyes and I was like, Oh, I’d like to get that checked, you know, if I need to eat something more or whatever, let’s have a conversation with the GP. And that led to a whole series of tests. Which over a period about six or seven months led to a diagnosis with an autoimmune condition of my liver. So I like to kind of say it’s my vanity which got me… the through the… into diagnosis. Um, and then that started a whole medical journey. And then what I’m able to do from that diagnosis is look backwards at my twenties so had a lot of problems taking the pill, and that has to be obviously processed by your liver. And now I can look at it and go, Oh! That, um, response in my body where they were measuring my blood, which we thought was just like, Oh, okay, that doesn’t work for you, was actually a clue to the autoimmune condition, but those, I just went off the pill and then my body was fine and it just looked like I had slightly elevated blood tests, but it wasn’t a real concern for anybody.
Brianne: Yeah, and those kind of, in retrospect, things are always really interesting. I think you get new information and all of a sudden everything kind of shifts over or there’s a lot of shuffling of your memories. Yeah. And I’m, I mean, honestly, I’m amazed that you could go into a doctor and say, ‘I have dark circles under my eyes’, and that a doctor would be like, ‘yes, let’s investigate that!’
Michelle: Laughs ‘Lets investigate that!’
Brianne: And so what were they looking at?
Michelle: So, what they did was a whole lot of blood tests. And what that showed is that the autoimmune condition of my liver shows up in blood tests as elevated proteins, particular proteins that you get. So it’s a liver function test. And mine were, you know, maybe four or five times the normal, but actually for a diagnosis, to be really clear, they might have to be a thousand times or whatever. The range is sort of zero to 35. Mine would have been about a hundred, 120. But it’s sort of, the process is okay, you don’t have fatty liver or a range of regular conditions. And in Australia, the autoimmune condition I have is like two and a half thousand, in Australia. Okay. I’ll double check that. We’ll note sort of thing. So its very rare, and they do it by…
Brianne: Whats it called?
Michelle: It’s called Autoimmune Hepatitis, which is very different to Hepatitis that’s viral. The Hepatitis means that your liver’s inflamed, and if the illness progresses, you basically end up with cirrhosis. So it goes through that process. The same as an alcoholic sort of liver, and it’s caused by a protein in my blood and has nothing to do with diet or you know, anything else or drinking or whatever. And again, retrospectively, I wasn’t interested in alcohol. I didn’t like the taste, and then years later, it makes sense. Like, Oh, okay, this is why my body wasn’t interested in alcohol. It’s got enough going on. It doesn’t want more toxins. So that sort of process gave me as retrospectively this awareness of trust in my preferences from my body and how to trust that actually, I’d been caring for myself all this way through.
Brianne: I think a lot about… kind of the question of like looking back over preferences that I’ve developed or habits that I’ve developed or what I think of as my personality, almost. Like I’m a planner, I can be very… like focused on following a plan and how much of that is kind of just personality and how much of that is, ‘I’ve had to manage my energy my entire life, but I didn’t know that at the time’.
Michelle: Yeah, yeah.
Brianne: Yeah. And so for you, um, were there other things, like you kind of had this visual symptom and you had had this problem with the Pill, did it, does it manifest in other physical ways or was it manifesting at the time?
Michelle: No. So the liver is a bit tricky. You often don’t know something’s wrong with the liver until it’s really, really, really wrong. It doesn’t have a lot of symptoms. So I had no fatigue. I was okay. You know, doing yoga twice a week, I was taking dance classes. I started to box. I was working in a government job while running my own business, a philosophy business, so running philosophy in the pub. So it was just very full at both ends. And that had always been the case for me. Often had two projects or work endeavors going at the same time. So what had happened is they sort of sent me, through a diagnostic… diagnostic process and ruled out a whole lot of other things. And then it’s like, ‘okay, we think it’s autoimmune hepatitis. We’re gonna test with a liver biopsy’.
Michelle: ‘…to see if your liver’s inflamed or what’s in there’. So they do that test. We should… I was… it was the week before Christmas in 2005. So I was all set to go home for Christmas from Melbourne and the biopsy, I didn’t realize, but it laid me out for 10 days. It is, it’s quite underneath the rest of your fatty parts of your body and it is not very happy about being punctured. So we, on the… and I sort of didn’t realize, they said, Oh, you take some Panadol, you’ll be in pain, but actually you’ll fatigued the liver’s bitching and needs time to recover. And then I had a diagnosis within two weeks. So, the diagnosis was ‘this leads to cirrhosis. That’s, that’s the journey. You don’t, it doesn’t go anywhere else. So we need to start you on a steroid to reduce the inflammation and then on a order, immunosuppressant drug in order to suppress your immune system, which is literally attacking your liver.’ So [unintelligible] in my blood goes, Oh, your liver looks like a liberal organ transplant. That’s foreign. I’m going to attack it.’ So I started to take drugs, and they made me sleep, 18 out of 24 hours a day.
Michelle: I was incredibly fatigued, I couldn’t function. So I’d had this really healthy, active life. I felt fine, really well. And that then I was taking drugs to prevent some future cirrhosis, and they made me feel like crap.
Brianne: And including a steroid, you’d said, right?
Michelle: A steroid to stop… So the steroid made me have suicidal thoughts, which I was able to witness and I just went off it immediately. That’s not happening. So they normally give you, you know, a particular type of drug and then if that doesn’t work, they try you on another immunosuppressant drug. That didn’t work either. And I spent about a year and a half struggling with trying to work this out. In Australia I went through the private health system, so that has some rebate from the government for your appointment and you’re covering a gap. And that, that was all financially possible for me. It didn’t have any strain for me. BUt what happened is as I kept going, I changed doctors and still got problems in the treatment process. And I went to one appointment and this private doctor said to me, “I think we’ve reached the limits of medicine for you,this is where it’s at.” And I was like. “Yeah, no, I don’t think thats where we’re at.”
Brianne: Is that a thing? Are we there?
Michelle: Yeah, Yeah. So that was, okay, I’m done with the private system and my general practitioner had said to me, why don’t you go public? Because it’s rare. And in the public health system, you deal with a liver clinic as opposed to a private specialist. I had this resistance to going to the public hospital because it would mean 35 minutes on a train for me, and I could walk to the private specialists, and I had this journey for a couple of years of like, I don’t want to go all the way to the hospital. That seems really annoying. Yeah. But in the end I did and you have like an outpatient clinic, which is you turn up and you’re in a pool of a whole lot of people. There’s a pool of specialists and you get rotated in and you wouldn’t get the same specialist. So I did that for awhile. Again, drugs, treatment, no, not… didn’t work.
Brianne: And was it the same when you say it doesn’t… it didn’t work, was it… were they the same kind of side effects that you were mostly managing? Like your quality of life was just so impacted that it didn’t… it wasn’t a good idea. It didn’t feel right for you?
Michelle: Yeah. It’s very hard to comprehend that you feel much better off a drug like incredibly physically vibrant and taking this drug and you can’t make your yoga class. It’s just, that’s, that’s rubbish. I’m not interested in that.
Brianne: It’s such, such a future risk. Not to say that it doesn’t matter, but just say like, does it matter if my quality of life is so impacted? What am I doing this far? I can imagine that would feel absurd.
Michelle: Yeah, so I was 35 and it was. Like, this is ridiculous. Plus it had a lot of impact on work and I was struggling to go to work or engage in work. So what happened in that process is that after a couple of appointments, I ended up getting just in the rotation scheme, the head guy of the liver transplant clinic, and he looked at me and said, ‘Yeah, this isn’t making a lot of sense. I’m going to pull you out of this rotation of specialists. I’m going to see you personally, and I’m going to put you into my pre-transplant clinic, so that you will see me ongoing personally’. So I got pulled out of the pool into a much smaller pool where you actually get an appointment. And then that relationship was really powerful for me. I basically said to him, ‘okay, so these drugs aren’t working for me. You’re not able to offer me anything but these drugs at this point in time. It’s five years is the life expectancy before the cirrhosis really gets involved. If you keep going, I’m going to take my five years and go do the things that I want to do. And we had a quite a bit of tussling over it, with the specialist. And that really helped me work out my own boundaries and professional… this is a professional talking to me and I’m a professional person about autoimmune condition and the impact in me, I’m an expert in what’s actually happening in the side effect part of my body. So, there was a process where we just monitored the bloods and they just went up a little, but again, they were very minor, and there was a point at which I said, look, we’ve been pottering around in this monitoring process. I feel like I’ve given you now five years to help work this out. I was definitely getting more fatigued, but I was suddenly nowhere near cirrhosis… like we were very clear about monitoring that process. So I said, ‘I’d like to give Chinese medicine a go.’ and he said, ‘yeah, alright, I’ll continue to monitor you, but there may be a point at which if you won’t take treatment, we have to part ways.’ Which was pretty heavy handed and I respected what he was saying, but that was sort of, you know, holding your capacity in the face of this process is what the opportunity is that, um… holding your capacity in the face of medical authority, for me, it was the opportunity to, again, strengthen and strengthen and strengthen my own personal boundaries and my own personal trust.
Brianne: Yeah, because I just… it’s like on the one hand, can I imagine that, many doctors, I think… cause you hear this rhetoric all the time, right? Doctors who are like, ‘patients aren’t trying everything that I tell them to get better, and so I’m not going to be responsible for the devastating outcomes’. It’s like this specific kind of narrative. And then, as you’ve just been describing, you’re like, ‘I’ve been doing everything that you tell me, and all that’s happened is I’ve lost my quality of life and that it doesn’t make any sense that you’re telling me that that’s not as important as my willingness to follow your protocol.’ Like, is that what’s at stake here?
Michelle: Yeah. And for me, I’d already tussled over I won’t take treatment. And we agreed to monitor, um, really what my blood levels were doing right. So I went off to Chinese medicine and my GP, again referred me to somebody and this is really powerful because her capacity to think outside all of that. And I think just go with some of my questions and support that. So I had a referral from her to a Chinese medicine doctor. When I went to see him, he’s like, ‘okay, I can’t believe you’re still walking your, um, all of your other signs from a Chinese medicine perspective is you should not be as well as you look’. So we tried some herbs to address the liver. So there’s two things in that. One is western medicine don’t add anything else to your liver to process particularly Chinese herbs, cause it can inflame the liver and it’s difficult for them. And the second thing was when I saw the Chinese specialist, we worked out that i’m the inverse of most people. So if you give me a herb to calm me down, such as camomile, it actually overstimulates me and I get a lot of energy and I don’t sleep.
Brianne: Huh. That’s interesting.
Michelle: If you give me a drug like Ginseng, or herb like Ginseng, which is to activate you, it sends me to sleep. So I’m the inverse of what normative processes look like, which he found truly fascinating. I took the Herb’s and it did show reduction in my blood levels, but it reached a point that it was very slow and I was starting to feel unwell. So I continued with the specialist and he said, ‘look, let’s do a biopsy of you and just see how you going’. They did a biopsy and I had an appointment, a couple of weeks later, and he looked at me and said, ‘you take treatment today’. And I looked and said, right, okay, we’ve reached a point peter has said you take treatment. Our agreement was, the day that Peter says I take treatment, I take treatment.
Brianne: I was just going to say, and so this is after the biopsy results. And so that’s just looking at relative damage in the time, especially from the last biopsy to now. And also what this biopsy shows, I guess objectively, for damage to your liver.
Michelle: So what it showed in his words was it looks like a bomb has gone off in your liver and your blood results are extremely deceptive. So where they look like it was a hundred or 192, the correlation should have been around 2000 or two and a half thousand for the results he was seeing in my liver. So I had complete trust in him that, okay, we’ve reached a point and treatment starts and he was, ‘you do not leave this hospital without drugs.’
Michelle: Okay. So part of that treatment again meant a steroid. And I said, I will not take that steroid without a psychiatrist consult, because it makes me feel suicidal. He said to me, ‘yeah, look, you know, you might feel depressed, but we can cover that.’ But I was like, ‘I dont think it’s depression’. Either way, he had a psychiatrist down to me in the clinic within 45 mintes. And I was like, okay, this is really serious. I’m in Australia at a public hospital that they’re very big organizations, and because it’s public, you know, you’ve got one psychiatrist to a whole transplant clinic.
Michelle: Um, so I went, you know, across the corridor into the psychiatrist’s consult, explained to him the symptoms I’d had previously, and he said, ‘Oh, okay, they’re psychosis symptoms, not depression symptoms.’ And the difference was, it wasn’t ‘oh, I’m so sad I want to kill myself.’ which might feel … I don’t mean to be glib… which has a depressing kind of code. Mine was, I would look at my forearm and the bath, and the thought would be ‘I wonder how long it would take for me to bleed out if I sliced my forarm open?’ So I was very clear about the symptoms, he was very clear… ‘okay, we’re going to give you a really, really small dose of this and see how that goes for you.’ And that was really to counter the effects of the steroid, which needed to be done.
Michelle: And then the other drug treatment was to start on immunosuppressants. So the thing about that is in the period of time between 2005 and 2012 now, so it’s quite a long period of time that I had been in this experience and following the process, a new drug had been released that people were using for transplant patients. It wasn’t publicly available in a reimbursement scheme for people outside a transplant patient, but because he was the head of the specialist of the hospital, he was able to write the authorization and I trialed a new drug. In that process. I wasn’t allowed to be by myself for a couple of weeks. I stayed with a friend. I got completely knocked out, like overwhelmingly. Same experience with the steroid of just fatigue in capacity to get up and the deep concern of, ‘Oh, fuck, how’s this gonna work?’ That, ‘ is this drug going to work and are they going to catch this?’ And the reason that question of ‘are they going to catch this now that I’ve started treatment before it’s really ticked over into cirrhosis?’ Was a question for me, is that, again, Peter, my specialist looked at me and said, ‘if you don’t take this drug, you have six months before this is in organ failure territory.’
Michelle: So again, it’s like, okay, this is, this is the crossroads. What am I gonna do? I’m clearly going to take the process. The steroid knocked the inflammation, unbelievably, down very fast. Like I went from 192 to 30 or something within a couple of weeks in terms of the blood test results. So it knocked it right down into normal and then I was able to wean off that and wean off the… well, it’s really an antipsychotic drug that I had. Even though it was a very small dose, we weaned off both of those, but I had still, you know, ballooned up as you do with a steroid. I was still very fatigued. I was very anxious and worried and having that conversation with death and mortality. And this is a really real conversation I’m now in, it’s like, ‘okay, here I am. I’m 42, and you know, I’ve got more than my five years from 35 to 40. But this is where I am.’ And all of that anxiety and stress and having to fill out income protection forms and going to rounds and rounds of medical appointments.
Brianne: And had you been working? Because I know you had that at the beginning. You were talking about how kind of active and involved you are and had you been able to maintain that after you went off the immunosuppressants the first time?
Brianne: Yes. So you were kind of facing that, like you, that lifestyle was still very present for you as you are dealing with the fatigue and the everything.
Michelle: Yeah. So what I had done is, um, I had traveled, I had worked out where I wanted to go, so I wanted to see Paris. So I had gone to Paris. I became very… it… there’s a freedom in it of ‘what are the things I want to do? I’m not going to get everything done. Like I’d like to go to Russia, but I’m not going to get that done.’ But I’m also really invested in the business I was running and the entrepreneurial adventure side of that. So I had done all of that, but I had started to get quite fatigued in about the six to eight months before this level of intervention. But I knew that a liver… I knew the impacts of a liver biopsy, so I had delayed the biopsy till after my birthday and really prioritized a balance for me of interfacing with the experience of being unwell and interfacing with the other parts of me that wanted to still be connected to living.
Brianne: Yeah. That’s a hard balance for sure. Yeah. Okay. So, so you had kind of… all of that was happening as a backdrop to now, you have phased out of the steroids and the anti-psychotic, but you’re still taking the… what had been a transplant drug and figuring out what the repercussions are, not repercussions, what the side effects were, I guess, like what would be your baseline now, right?
Michelle: Yes. So the immunosuppressant, what is a very high dose, to protect the cover, and stop it inflaming. So what that meant in practical terms for my life is I was bed bound cause I still had enormous fatigue from this process. I couldn’t do.. I couldn’t go to the groceries. I couldn’t walk to the end of the street. I just couldn’t do any of those things. There’s a psychological process that went along with that for me. One was that, clearly the conversation with death itself at such an early age, has a whole range of ramifications. So for me, I really took the time and read up on mythology and sort of how do you have a conversation with the underworld really. And I went to Greek mythology and invested in not only reading, but finding things that supported that psycho-spiritual part of myself. I had a very deep, longstanding meditation practice. so from that perspective it was
like, ‘okay, well this is the reality, how are you going to work with this?’ I read the Tibetan book of dying, so that’s what I invested part of that psychological time in. The other part is I had left home at 17 and supported myself for all of that time. And… oh, I had to face that I needed people to help. And that felt not only frightening, but almost impossible and there was enormous anxiety. for the fact that I could not take care of myself in this space. And friends turned up and rostered, you know, to do the grocery shopping for me and the help was there. But I really had to go through a psychological process of being okay and facing that fear and uncertainty while letting people support me. And that was another key psychological… I see it as training, like this is the training that the experience offered me, is how to open up further in my capacity to let more of maybe seeing and to also let other people be present only.
Brianne: And there’s, I mean in, in that being able to accept help. Like there’s so much different stuff mixed up in that, right? Like I know for me there’s partly like a scarcity mentality. Like if I ask for help too many times there won’t be help anymore. So I have to be really careful that when I ask for help and who, and there’s also the vulnerability, which I think you just alluded to of like, ‘how can I let someone see me when I’m bed-bound when I haven’t showered in however long? All of these different… when I’m not kind of the self that I want to project publicly?’ And there’s like, I feel like there are so many different strands like that to untangle in that, in that training, as you’re talking about it, and I’m sure it’s different for everyone of course, but these themes come up over and over again and it’s hard. It’s work!
Michelle: It’s hard. And it is, um… it is part of the experience, like this is what the experience is. There’s a body experience. There’s a spiritual experience in my view. Even if you’re an atheist, there’s a conversation with mortality. It’s very present and very real, and then there’s an experience of your own patterns and defenses that get challenged and have to be reordered.
Michelle: So that also I had a business and I had the best year I’ve ever had financially with the business. And so I wasn’t going to events and running things. I was sure drilling a whole lot of other people to go to events. And it sort of feels ironic, but it’s also, I had a very creative time, like I have found that being unwell, if you can engage with the anxiety, and for me it was finding other models of how to have this internal conversation and mythology provided that for me, it really opened up more and more creativity for me. The second thing in that process is I had an act… have… the second thing in that process is I have an academic background in philosophy and I happened to be having that conversation with a philosopher that I’d known for a long time and she referred me to this very small book… bio philosopher… about how to engage with serious illness. And it was fantastic for me because I’m interested in that intellectual process. I’m interested in the engagement of ideas. This is a conversation about identity. This is a conversation about capitalism. This is a conversation about what’s normative and what’s not. And this very small book written by a philosopher who had a condition which affected her breathing capacity and it’s degenerative. So she stopped being able to climb stairs to teach her students. She had to go with an oxygen tank into the university. And I found real resonance with what she had processed and worked through from that more analytical perspective.
Brianne: And what’s the book called?
Michelle: I would have to look it up.
Brianne: I’ll put it in the show notes if we can find it.
Michelle: Yeah, no, I definitely know it. It’s called Illness, but I can look that up for you if you like.
Michelle: So the book that I read is called Illness, and it’s by Havi, H.A.V.I., Carel, C.A.R.E.L. Mmm. And the current title looks like it’s called Illness: The Cry Of The Flesh but the book that I got was called Illness.
Brianne: Okay, great. That way, if anyone wants to go find it they can. Okay. So… but yeah, you were saying it really resonated with you the way that her story and your story…
Michelle: Yeah. And it was somebody engaging with the conversation. So the aspect I knew of my personality is I want to know the truth. That’s fundamental and I want to have the hard conversations. I don’t want to be protected from those conversations. I want to have it and I want to know what the options are. The psychological process that I went through then was also… I was in many ways, felt I was surrendering to my specialist process now that it was this serious, and I had to work out how to deal with that internally as well. And I had awareness that through therapy and that, that I had, you know, fear of being abandoned, fear of being left alone. And it was great to have a psychologist…. Um, it was great to have a psychiatrist to have this conversation with and we worked out a process where, internally what I did was see, okay, Peter, my specialist is like the head of the army for me. He is looking out from the fortress, what the risks are, assessing what the military strategy is, and he is informing me of that process. And so he’s not in charge of my decisions. He’s giving me, as my sovereign self… or I like to think of it as the queen archetype… as the queen of who I am and what my resources are. He’s giving me advice and at this point in time, I’m taking that expertise. But his job to stand at the fortress wall and defend, and it’s my job to take in the information. What that offered me was a way to stop me trying to fight the illness or spending all the energy trying to work out what to do. Um, and the anxiety of feeling I had was the only person in this journey.
Brianne: Yeah. Cause I think, for so many people… and it depends on your condition and it depends on how much you trust your doctor and how that expertise… I love, like I love that way of thinking about it. And I feel like. One of the things that that is part of this process that you also went through is like finding a doctor that you trust to be in that role. Because without that, that’s that feeling of being, ‘I’m alone and I don’t know how to make the best decisions and I don’t know where to find the information.’ And like. So much chaos… or on how to proceed to just care for your body. It’s hard.
Michelle: Yeah. I think for me it… I was always very clear that I… What happened for me is through the journey, I had built up psychological processes to deal with the journey and it had actually led me from being afraid or confused or a little more compliant, to actually being really clear that I am the decision maker and I choose to… I choose to take this advice. But it is still my body. It is still my journey, it is still my choice.
Brianne: Yeah. It makes sense. So this is in… this is the kind of post treatment period, and you had said you are very much at home and working with these specialists and also running your business while other people were able to go out and kind of actually run your events. So did things stay kind of stable at that level, or did you begin to see other changes in your body and your mental health and any part of the experience?
Michelle: So that intense period lasted from [pause] I think December, 2012 through to around November, 2013. I also had a part time job that I’d had for quite awhile, and I started back to work in an office. Uh, my role was three days a week, and I started back at five hours a week. Ah ha, and that was really, energy-wise, it was about testing my capacity to go in. That choice was really clear for me because I’d tried to struggle through the fatigue, previously, I was really clear I wasn’t going to go in again and try that struggle. But I did start back at five hours and got income protection insurance that covered the rest of my finances as well as the business aspects. That was a really slow journey. We built up from five hours a week to a couple of hours on non-consecutive days, and it took about 14 months to get back up to three days, a couple from home or then one from home and then back in the office. I went through a process that a lot of people experienced. Then in terms of returning to work, there’s a lot of HR conversations. There’s a lot of pressure about when will you be well, there’s the not wanting to upset you, but then as it goes on further and further, it’s like ‘well you’re looking well, you look like you’ve got capacity’ so internally, this illness is invisible because I started to look healthier and healthier through the recovery. Again, that process for me, psychologically, it was about how to have boundaries and how to have really clear, honest communication with people. So the whole journey with being unwell is actually what built a whole lot of healthy, functional capacities within me. And I would have conversations where I would say in my own wellbeing, ‘It sounds like you’re asking me when I’m going to be, well, I actually don’t know when I’m going to be well. I’d love to know when I’m going to be well, but I do not have the information to have that conversation with you.’ And having that direct response and really calling out what the conversation is… going on, what’s going on underneath and saying, ‘you’re welcome to talk to my specialist. You’re welcome, you know, if you need further advice, that’s always available.’ And then watching people backtrack their behavior in the front of actually having a direct conversation with them. And them going, ‘Oh, no, no, no, no. I don’t need to talk to a specialist store. Oh, no, I understand that you can’t tell me that.’ And I found that what that did was really confront passive aggressive behavior in the other person, but also it released my own passive aggressive behavior as well. And so that’s the psychological journey for me. It was consistently using the experience to be able to tell the truth more and more to be with life on its terms, more and more, and to really have a healthy relationship with my own wellbeing in whatever that context was. .
Brianne: Yeah, and I’m so struck… I’ve been thinking about this weekend, but it comes up in waves about… even the boundaries piece, which you talked about of how illness can really change, like it has for me, how I experienced boundaries, especially if you grew up in an environment where it was maybe difficult. It’s like previously I would be expressing preferences, but the consequences might be that I was upset or hurt, or they were emotional, and all of a sudden with illness, the consequences of not maintaining my boundaries are very physical and obvious to other people, and it changes what it means to kind of enforce them. And that’s really an interesting journey, I think. And the same as you’re saying about talking to other people like, “Wait, is this what you’re asking me?” Because now there’s a different thing on the line, which I don’t think makes it more valid. But I know the experience has been different.
Michelle: What I did for myself was I started to map the process. So I used the mythology and just went into a very internal part of myself. So I worked out that the map of illness and recovery for me was that first you’re out at sea in a boat. You’re just sort of flung in there. You cannot see land. There’s nobody else there. It’s nighttime, it’s dark, and you’re in a boat going, “Okay, well, I’m not in the water, but I’ve got a really small boat here.” And I got to that through reading mythology around the god, which is Poseidon in the Greek philosophy… I got to that through Greek mythology, which is Poseidon in the sea as the lord of the sea, and in Roman mythology, it’s Neptune. And there’s a lot of interesting discussions about Neptune and Poseidon about water. They’re the god who can throw your ship over and plunge you into the sea to your death or can also help you get to land and get to journey. But it felt really clear to me that the experience was being in this very small boat in this water, and you’ve got no idea where you are or how. You cannot see land. The next phase was that as the drug treatment started to work and you start to be able to walk a little more or go grocery shopping with somebody helping you. I felt that that was like being washed up on the beach. So you’re exhausted from the journey. Your body’s really tired, but you’re through that very, very acute experience of what the fuck is going on, and I have no control. So that period for me of being washed up on the beach was like I cannot engage with the rest of life, but I’ve landed somewhere, and I know that this is what we know now, and there’s some possibility of moving back into life. The next part of that journey was to feel like I was halfway up the mountain and in a little cave, so I could see where I’d been. But this for me was really about returning to work a few hours a week, getting some stability, being able to walk around the botanical gardens in Melbourne, which is very close to me, being able to go grocery shopping on my own. I’m still very slow. I still need lots of rest, but it’s like being in a little cocoon, and I have some perspective of where I’ve been. The next phase for me is like the treatment worked, the drug dose is reduced, I’m able to engage with my business and go to events that I’m hosting, and I get some stability. And that for me is reaching the mountaintop. And I’m not so much looking where I’ve been as I’m looking forward going, “Okay, we seem to have got some control over the life threatening aspect. My drug dose has stabilized. This is where I am. This is the new normal.” The thing about that process is any blood tests, any deviation can send you right back into the water, not knowing where you are. And I just realized that this was a circular map, basically. And this is what resonated for me, and it gave me somewhere to emotionally stand in all of these processes, and it was really helpful. So what happened for me in that process is I then moved into coaching people with serious illness and was able to use this map for their journey. And it was amazing to me that this symbolic process resonated for women with breast cancer or MS or other other conditions. Women were able to identify, “Oh, I’m here in this map.”
Brianne: Yeah. And something huge… because for me, separately, but in parallel, in doing these interviews, I’ve kind of reverse engineered that same process, and I would use different language, but one thing that has astounded me is that the way that this process unfolds is not represented to us at all in media. And so this thing where you get sick, the what the fuck in the boat, nobody is telling us that that could happen to you at all. And that that could happen to you and you could be there for months or years. And so having tools to think through like, “How do other people experience this? Is this experienced by other people? Or is it just me in the void?” is so powerful. And I think that’s what you hear when you find out that it’s resonating with people. You’re like, “Oh, it’s not just me. I’m not just out there alone, falling apart with no rhyme or reason.” And it’s important. It’s important work to do.
Michelle: Yeah. I built it for myself personally. I knew enough mythology to work out this is a trip to the underworld, and if you go to the underworld, you are literally meeting Hades the God of death. And I also found the mythology of Persephone, which is in Greek mythology his wife. So she’s the maiden up in springtime, and she gets captured and taken down to Hades. And in that process, she gets stripped back of all of her overworld things like they’re just not necessary. And I found the experience of being unwell was a stripping down of my life. It was a stripping down of my body, both literally and in the way I experienced it. It’s stripped back my relationships. There was a lot of people who just had patterns of indulging or the relationships weren’t at the level of reciprocity that worked for me, and this process stripped them off. And I know that that’s really common for a lot of people going through it. And then it strips you down to what is important. What do I value? What am I going to put my time into? And the interesting thing about Persephone in the Greek mythology is she becomes the queen of the underworld, and she makes a deal between Hades and the overworld, which is her mother and Zeus, the king of the gods, that she will come up to the overworld for three months or six months. So she’s the model of springtime. Basically, she’s winter and spring. And the sense that she is continually moving between those two worlds made sense to me as a model and was just really helpful to find something that I could relate to that gave me a map.
Brianne: Yeah, yeah, yeah. That it like… actually, I don’t have a word for this, but the cyclical nature of springtime… it’s not rebirth in this context that I’m really thinking of, but this kind of like beautiful positive time, and then… I know the underworld, it’s so much more complicated than this, but like difficult, conversing with death or the way that you’ve been thinking about it… that it can kind of be both. It can go one and then the other. It’s helpful to just… I love it. I love mental frameworks.
Michelle: Yeah, I found the map. It came out of my inner psyche, like came out of me. But you’re absolutely right, nobody talks about this as a map. When I’ve gone and done workshops with breast cancer groups, women turn up because there’s this offer of a possibility of mapping the journey, and nobody in the room has had a map. And I think for me it’s really beautiful that I built something from my own psyche that then what I’ve done as I’ve recovered and offered this to others… we went through the photographs of my partner who I’ve met in the last three years, and he has pictures of the sea, and he has pictures of the mountain. And so I was able to bring up massive posters that we could put on the wall. And the first time I did that with a group of women, it was like literally the map of my inner psyche is now on four walls. And it was amazing to see this creative evolvement and then ask women to go stand where they feel they are in this journey. So it’s physical experience, not just a mental, let’s talk about it. And then what happens is that women who are in the sea and women who are halfway up the mountain can talk to each other about what it’s like, and everybody’s usually… I remember a workshop I had where one woman was through cancer, through treatment, well and truly in remission, and the day before she came to the workshop, her husband wanted a divorce and said it was time for him to leave her, so she went straight back into the sea. There’s a different reason she was in the sea, but it was just this amazing kind of process that actually, yes, illness can tip you into these places, but this is a map for relationships, for divorce, for changing jobs, for losing jobs. And most people have some sort of experience which puts them in these places.
Brianne: Yeah. ‘Tough stuff’ is a term that I use that I know is a kind of silly way to say it, but to kind of cover the range of difficult things that we can experience and have trouble communicating about or even placing. Yeah. And so getting to these workshops… so you had recovered your own health and thinking about that and then had gone back to work, you said three days a week, part time, and did you feel stable enough to start doing a new thing? How did that transition happen?
Michelle: So what happened is I had ups and downs where we tried to reduce the dosage I was in because they don’t want to suppress your immune system too much if they could get you down lower. When I was oversuppressed, I would get a cold and for somebody that might take a week or something to get over, I’d be down for three. If I got the flu, that might take two weeks for some people, I was down for two months. So I had this connection of this cycle again, and at this point I was still running philosophy events, so I just was working internally in myself. But I did stabilize. We found the dose that works. We went up and down on it, but it’s really clear what the dose at the moment works for me. I have a couple of kilos in weight, but that is the only side effect I have from the immunosuppressants. If I get sick, I’m stable enough and I go off the immunosuppressants for two days or three days to give my immune system, which is actually a very effective and active immune system if you don’t suppress it, to address the virus or whatever. And then once that’s stabilized, I take a take back the dose the next day.
Brianne: And that’s been a pretty easy transition with, if you take pauses?
Michelle: Yeah, yeah. It works pretty smoothly. So I’d been through all of that process and was really ready to now run workshops and launch this business. And what happened is I had done all the mapping and the promo, and I was ready to do the marketing, and I was going to hit the button on send on the Sunday. And on the Saturday night before that, and we’re now talking 2016, I went to a party, came down, got into bed, and woke up with vertigo, and got out of bed, went to make my way to the bathroom, as we all do when we get up out of bed, and fell to the floor, and the room was spinning. I couldn’t walk, couldn’t function, so called a friend, went to the hospital. Didn’t really get a lot of information there. They thought it was benign positional vertigo, which is where you have little crystals in your ears and they get into the wrong ear canal, and they do a physical maneuver and it resets you. It sort of reset me and sort of didn’t, and I still had it going up and down. And I ended up, again, not being able to walk with the room spinning. Went back to hospital, got admitted. This all happened while not only was I ready to launch a new business, but I’d taken up a new part time job as well. So I was three weeks into one of the most exciting jobs that I had, which was working with advanced care planning, so helping people have the conversation with death and work out what their values are before death. So in the end, my GP, again… I found a neurologist, a private neurologist, because the public health system was really a long time. Dizziness is not life threatening, it’s just debilitating. And it was five weeks to wait to get into this neurologist. I could not be at home because I couldn’t get my own food. I couldn’t cook. I was constantly dizzy. And I would lie in bed and be dizzy, like rolling vertigo as if I was being churned over in the sea. So couldn’t read anything because my vision was blurred. Anybody who sat beside me, I would see all of their movements and be overwhelmed by watching their hand move because I would see it track basically like the matrix. Their hand moved in slow motion and made me dizzy. And sound aggravated me as well as light. So all of my senses were overwhelmed. I made it to the neurologist, and he said, “Yeah, I can tell you exactly what this is. Do you have a history of migraines?” “Yes, I do.” He said, “Okay, well, you’re the right age and the right gender. What happens is if you’ve had a history of migraines, then as you grow older, it can turn into vertigo. So instead of getting the pain of the migraine, you get vertigo. But it’s the same as if you have a migraine.” For me, because the illness with the liver had been so strong, I’d sort of had a bit of vertigo, but assumed it was part of the autoimmune condition, every now and then. But I was having migraines Monday and Tuesday when I went into an office environment, and that had been going on for about a year or so. Debilitating, come home, throw up, go to bed, like really, really strong. So meeting the neurologist, I was at a point which I would do anything including taking a drug, and I was like, “Oh my God, I’ve got so many fucking drugs in me now. The concept of taking another drug is horrendous, but this is totally incapacitating, like unbelievably.”
Brianne: It’s untenable.
Michelle: Totally untenable. So I went through that process. And what’s happening is that your, for me, in the condition, the subconscious, which usually filters out light, sound, hand movement, etc, those filters stop working and your brain is allowing all that unconscious information to come into consciousness, and it overwhelms the brain. So they treat it with a drug that then reduces that overwhelm and helps send things back to the unconscious tracking movement. They don’t actually have a drug to treat that. It turns out that if you take an antidepressant drug at a very low dose, they accidentally discovered it addresses this vertigo condition. So again, I had to have a conversation with the office about, “I can’t come into the office. I can work from home… short periods of time… the whole thing about running workshops for women recovering from illness. Oh, well, I’ve just got a refresher course in what that journey is like again.”
Brianne: You can try it out yourself, basically.
Michelle: I tested again, doesn’t work. Well, meditation doesn’t work in this situation because your brain is… the worst thing you can do is try and concentrate on your senses or your breath. So it was a really deep struggle. And I was like, “How long is this going to take?” And he’s like, “Oh, about eight weeks.” But actually the reality is I still have the condition. It’s still treated with medication. I can work. I’m fantastic in natural environments, but an office environment still gives me symptoms, much milder, but that’s because they’re under control. So I can go into an office environment for about two hours and then I’ll get blurred vision and need to leave.
Brianne: So you can tell that the drug has had an impact and you’re still taking it, but there’s still… it’s like a sensory overload, it sounds like… yeah, of being in the lights, and the noise, and all the movement. Compared to places where that… it sounds like if you’re in a natural environment, it’s not that there’s necessarily no light, which I know a lot of people with migraines need to go like full quiet, full dark to cope, but away from the fluorescence at least. Right?
Michelle: Yeah. And the interesting thing is you don’t get the pain. You get vertigo, but you don’t get the headache pain. Vertigo is crap. It’s horrendous to deal with constantly. But it was a recovery phase. And again, there was this experience of what does this bring to my life? Like what are the new things I’m going to learn through this process? And when you can’t read, you can’t write, you can’t watch television, you can’t listen to the radio, you need to limit the amount of time chatting to somebody who’s in front of you, all I had left was self-compassion. The only thing I had was to work with self-compassion because I had nothing else I could do. I couldn’t create. I couldn’t talk on the phone because it was highly problematic. I could barely walk, so I was bedbound again for about eight months. And it’s just me and the Buddhist concept of can I have compassion for myself. “No, I’m really fucking pissed off. This is horrendous. Why do I still get a… can I have compassion for the fact that I cannot have compassion for myself in this moment?”
Brianne: You’re just getting a few levels away until that feels manageable, that feeling.
Brianne: Yeah. Yeah, I even think among all of the things that are not really represented, I think until you have spent a prolonged time in bed with yourself, you can’t even imagine what that experience is going to be like. Especially because there’s so many… being in bed by yourself isn’t the same as taking a staycation and napping, right? Like kind of all the things you just described. Yeah, all of these things are in the way. And depending on your condition, maybe you can read or maybe you can watch TV, but there are going to be barriers and it’s going to be different.
Michelle: And you are in relationship with yourself at your core, like what is here. How does help work? Like you were saying previously, “Oh my God, have I used up all my help? How the fuck is this going to work now that I’m bedbound again?” And yet it was like, how can you have an experience in 2012 and four years later in 2016 just as you’re feeling well get a completely unrelated condition, which has no relationship to the autoimmune, work out what drugs will work with each other in this process. And that is still part of my daily experience, but I’m very well now in it. And I’m still modulating. Like I can take a plane trip for a short period of time. I still get wobbly as I get off it, but I just need to rest and the body will reset. I really want to go from Australia to Europe next year in May. I have tickets bought. I have a plan. And it’s still like I don’t know how the fuck that’s going to go being on the plane because it’s noisy and it’s small and it’s not restful. I’m hunting for noise canceling headphones. I’m talking to the neurologist about, “Okay, what drugs can we take to knock me out?” What stops do I need to make along the way so that I have 12 or 14 hours in a hotel bed before I get up and do the next nine hours of the trip?
Brianne: Yes. And that’s a big one by itself because travel for some reason is not typically scheduled to allow a restful night of sleep in the middle, even if you know that you really need one.
Michelle: Yeah. And the most… I think the comforting and uncomforting thing is the neurologist said, “The thing is you’re not hurting your brain. The brain is… there’s no problem with your brain. You’re just going to be highly uncomfortable.” Which is kind of like, well, life threatening, you can go, okay, there’s a reason to take the drug. But actually, this isn’t hurting me, but I feel like crap. It’s a very different dynamic because it’s not life threatening. And again, I look well. When I do go to the office, I can walk. I used to wear sunglasses to the office to deal with the lights. All of those things have fallen away, but nearly four years later I still can’t do that level of functionality that people spend time doing, and the awareness of, that’s a really fucking stupid environment for human beings to be in any way.
Brianne: Oh yeah. Yeah, flying is awful. It’s so uncomfortable in so many different ways. It’s atrocious. And I think about this too, of like, what would my ideal travel look like? And the answer is that it would be very expensive, basically.
Michelle: Yeah. Yeah. I’d like to go first class with a bed. But once we get to Europe, we’ll train. And train is actually fine. But all of those things that you got put on hold and waiting to see if that will fall.
Brianne: Yeah. Like what will get easier? Or what will I learn that will make it more manageable even if my body isn’t necessarily doing better? I just put that in air quotes, whatever that means. Yeah. Yeah. And so are we more or less caught up to the present now in terms of everything that’s gone on?
Michelle: Yeah. We are. I think there’s just that experience of living with the process and making the choice about what is my circle of wellness. That’s really what I sort of think of. My circle of wellness at certain times is I can walk around the gardens, but that’s it. At other times, my circle of wellness is more expanded. I’ve moved from thinking about things as an illness journey to really a container of what is my circle of wellness. The other thing I’ve sort of looked at is I’ve found when you’re unwell, if you look at your peers and nobody else is unwell, you’ve got that measure of, I’m not normal, this isn’t normative. But what I found is when I go to the hospital and I sit with pre-transplant people, this is my peer, this is my community, and I’m right on track with this community. The measure is not with the other people whose bodies are highly functional. The measure is they are not my cohort or peers, my cohort of peers are people experiencing illness. That’s my cohort.
Brianne: Yeah, and I think that’s something that the internet has really changed for a lot of people, is being able to access who your peers are because one of the characteristics of this experience is how isolating you can be. And if you only know the people that you grew up with or the people that you work with, then you may or may not know anybody who has not even the same experience, but just a relatable experience to this illness experience. And all of a sudden, this whole world is opened up to be able to find different people and to create a support group that feels really supporting, and it can be really life changing to recognize kind of who your peers are in that way. I like thinking of it that way.
Michelle: Yeah. I sort of found that with specialists, they see a lot of people with this condition. It’s rare, but they see a lot of people with it. Whereas I’ve never met anybody with the autoimmune condition. But I did find a UK Facebook group for the condition, and that is amazing. It’s run by a not for profit specifically around the autoimmune condition, and it puts in the latest research. And I’ve had 2005 to 2019, so 14 years living with this process. Some people are newly diagnosed and it’s like, “Yep, tried that, try this.” And it’s a really, “How to have the conversation with your specialist. Don’t worry, there’s a lot of drug options available for you.” So there’s that. The Facebook group for the migraine vertigo is a collective sort of group. It’s not run by a not for profit or support group. And I found that I had to get out of that group because it was a lot of unsolicited advice, a lot of different views about what to do or what not to do, but it just wasn’t actually really helpful, and I had the experience of being more anxious through being connected to it.
Brianne: Yeah. The Facebook groups are I think very hit or miss. It’s interesting to see. I know people usually when they like them, it’s because there will be an extra thing. So being run by a nonprofit that’s actively curating makes sense. Sometimes for people it will be having a different element in common, so maybe it’s about chronic illness, but it’s also about crafting or it’s about chronic illness, but it’s also about parenting. So it anchors the conversation so that it’s not just health anxiety, which is the theme I think, of the kind of bigger uncurated ones.
Michelle: Yeah, that’s perfect.
Brianne: And so is there anything that we haven’t covered that you wanted to talk about today about chronic illness or all of the pieces of this stuff? I know we have covered a lot.
Michelle: Yeah. I think for me the keys are you do not need to be stuck. There are resources for you. So I think that’s fundamentally an important thing. There are options for you. And it can feel like there are no options for you, but actually the part of you that wants to be more assertive, wants to have healthy boundaries, wants to be able to talk with the doctors and feel respected, wants to be able to negotiate with HR and not constantly feel like there’s all this external expectation. That’s part of the experience, but you can be resourced in these parts. You can grow into a healthy medical advocate for yourself. You can grow into more healthy functional boundaries, not only with your family of origin, but also with partners. I think the beautiful part of my journey is when I entered the migraine journey. When I sort of get bedbound, I then think, “Gee, it’d be nice to have a lover around. It’d be nice to have a partner. I don’t really spend a lot of time on that.” But when you’ve got nothing else to do and you’re on your own, you kind of think, “Gee, romance would be nice.” The other part of my journey was that I was in my forties when the vertigo condition came, and I was really clear that I wanted to stop dying my hair. And it was tricky to work out when to stop dying your hair and let the gray hair that’s naturally there be present. If you cannot get out of bed and you can’t go to the hairdresser, then you actually have all this… and you cannot dye your hair because you can’t sit up enough. You are letting your gray hair grow out. And you’re not going to the office or anybody else is really seeing you. So I took the opportunity to let my hair go gray, and then when I was well enough to partially go and sit and have my hair cut, we just cropped it all off back to gray. At the same time, I stopped wearing makeup. Not because it was something to do with my condition, but I really wanted to be myself. And this process of feeling unwell and the stripping back just gave me this experience of, “Fuck it. I just want to be who I am. I’m old enough. I want to be myself in the world.” For women, when the culture tells you if you stop doing your hair and absolutely if you stop wearing makeup, men are not going to be interested in you at all. Like you have just totally fucked up.
Brianne: Yeah, You’re giving up.
Michelle: I found the opposite happened. I found that I was able… just gently when I walked around the street, I had a more engaging relationship with men that didn’t feel as predatory or didn’t feel as focused on the body. And what I felt like is I was an equal. I was my age in my body and that level of autonomy and authority was very engaging. I went on a date with an app. I had photographed myself with gray hair at this point. There’s a lot of dating that didn’t happen, but I went on my first date in many years and with no makeup. And the man that I met on that date was enthralled by being with a woman with gray hair. He’d spent time in America, and he was like, “Oh my God, this is like being in San Francisco. This is really hip. This is cool.” So we had our first date and we’re still together nearly three years later. And he has never seen me wear makeup, and he’s never seen my hair in a different form. So part of this journey of working with illness is also a part of the journey working with authenticity to me. And there are opportunities to really have a deep relationship with your… not only your self compassion, but with who you are in the world and take up the space of being you and let go of the people pleasing space or the defense space. And they’re skills. It takes years to develop these skills. But that’s what I would share is there are opportunities to be connected to yourself often in ways that other people don’t get the chance to be connected to their selves.
Brianne: And I’m really struck from kind of where you started when you were saying you don’t have to be stuck. And I think when we’re talking about illness so often people can hear that and think about it in terms of purely the physical of like, well there’s nothing else for me to try or my symptoms are what my symptoms are and be really focused on kind of what your physical state is. And I love this question of like, “Well, I might not have any options to pursue right now around treatment, but what can I do to change the experience and the emotional experience?” And that was the list that you just gave. I don’t mean to summarize you, I’m just really struck by the question of going, “If I can’t change the physical, how can I change the emotional?” Because those are such… those are two parts of pain. The emotional experience of pain is a totally different layered component, and it is a place where you can make change. And I’m not saying that that means that everything will be magically better. And I don’t think that you’re saying that either. It’s an opportunity to kind of change the questions that you’re even asking, and that is powerful.
Michelle: For me, it’s an opportunity to meet yourself. So one part of you in this process will always be the victim, and that’s often appropriate. Like you feel victimized by your body, you feel victimized by the medical community. The reality is that you are an adult actually, and you do have more conscious choices and you have the opportunity…. the medical community will often want to treat you like a child, and you actually might feel really comfortable there in an it’s all too hard process, and there’s an opportunity to grow up, to emotionally engage, and to understand that there are choices available for the adult part of you. And that’s why I think of your capacity as a circle of wellness. This is what my circle of wellness is. You have the opportunity to really look at your relationship patterns and as you’re frustrated and irritated and pissed off and upset about how other people are supporting or not supporting you. I remember I had somebody who was very practically helpful when I was blown up like a balloon with steroids and the liver process come to visit me in my house and say, “Gee, it really makes you grateful for your health, doesn’t it?” I was like, “Are you fucking kidding me? A little bit of filter here people.” That’s horrendous to say. And she was like in her sixties and I was in my early forties. But so there is this opportunity to kind of really see other people’s capacity and understand that they do not have capacity to engage with this experience. And for some people that will really activate their narcissism and their self-centeredness and their gratitude about how they’re not having this experience.
Brianne: And they’ll tell you about it.
Michelle: And that’s the thing about it, and other people will turn up and say, “Oh, well, have you thought about how your own emotional body is creating this physical experience for you? And if you just thought more positively?” Or all the new age concepts, “Have you tried this diet? And, have you gone gluten free? Have you thought about what those drugs are doing? Have you tried acupuncture?” And there’s a process of explaining to people, “I’m very comfortable with my choices. I’m very comfortable with my experience. I appreciate that you have some concerns, but I’ve actually done a lot of research in this process, and it’s not just a matter of changing food for my liver because it’s not the food which is activating this liver condition.”
Brianne: Yeah. Yeah.
Michelle: But that’s a whole process. And the other thing is people like to summarize your experience, or introduce you as this resilient person, or try and empathize with you by saying, “I can imagine this, this, and this in your experience.” I went to a women’s circle and the host of the women’s circle was like, “Oh, Michelle, I know that you’ve really had to work with boundaries or whatever, blahdy blah.” But she summarized in a way which was not my experience, and I said to her, “Actually, that’s not my experience. My experience with the medical community is this. This is what I’ve found for me.” So there’s all this relationship calling out that goes with this journey, and it’s exhausting.
Brianne: Yes, it is.
Michelle: It’s exhausting.
Brianne: And especially in what you flagged as you know with so many people that you’re like, “They think that they are doing a good thing for me,” and maybe they are, like they’re helping or they’re helping with food, or they’re helping with whatever, and at the same time, this emotional thing is going on of those different categories and you’re just like, “Okay, I really have to learn how to navigate being grateful for the help that they’re offering and figuring out how to talk about the other pieces that are not so helpful for all of those reasons and get comfortable with having that conversation over and over and over again,” because it’s work.
Michelle: Yes, sometimes the most helpful people are the least helpful people in the experience, but there are still opportunities for you to learn. Like the people pleaser in you is going to fundamentally get challenged in an illness experience, and that is an awesome thing. You are starting to address a lifetime habit. And for me, there just are so many ways in which you can develop maturity and you can come into your adult maturity. And for me, I’ve looked at illness and seen it as an initiation into sovereignty, into autonomy, into healthy functional relationships. It’s the initiation and it’s the gate, and it’s hard work, but it’s also really intense work. And you really get the opportunity. You don’t spend 30 years trying to work out this relationship once you’ve been unwell, you’re like down to working out this boundary as soon as possible.
Brianne: Because you also have a lot of time. Even when cognitive function is impaired and your brain is maybe not working as fast or as efficiently as it used to, you have a lot of time all of a sudden, and you can use it however you want.
Michelle: Yeah. I think the other thing I would say about that is sometimes psychologists are helpful and sometimes social workers and psychologists are really overloading you with all the things that are wrong or trying to push you into a different perspective. I went to some professional development for cancer survivors, and the social worker presentation was all about, “These are all the things you might experience with chemo, or these are all the residue from your treatment, or these are all the boundary issues you might have.” And they spent six slides listing all the problems and the solution was just know that these are normal and have some self care. And I was like, “Fuck. Stop listing all my potential problems and depressing everybody instead of saying… like the word resilience. It’s not resilience. It’s like you have been initiated into the strength, courage, and power of who you are.” So I have some very strong views. And, I always encourage people to look for somebody who has depth and capacity to support your courage and wellbeing, not helping you run round in the trauma of the experience.
Brianne: Yeah. Yeah. And I think… I don’t have an answer for this, but the work of choosing, if you want mental health support, the work of choosing that practitioner is going to be work, because right now, certainly, chronic illness isn’t its own category that they’re self-selecting into. And even if it were, you don’t know that the first person you see is going to be the person that works for you. But it’s not like some other things where you can kind of go, “Okay, is this a therapist who specializes in this kind of an issue?” It’s not even on those lists a lot of the time.
Michelle: There’s that. And there’s also if you go to somebody for relationship therapy, even if they all have codependency in their list, whether or not they are actually helpful to you is a different thing. Whereas I found things like tantra and body work and actually coming into your body and having a capacity to just be really gentle with yourself and your body are far more helpful then sort of models of care. Like a lot of therapists and that will go to gestalt therapy, or this is the model, it’s cognitive behavioral therapy. And I think they have places, but if you do not feel met in the depth of your experience, then really have that capacity to make more choices for yourself. You’re not just stuck even with that mental health practitioner. It’s hard work to go find one, but also it’s your time and it’s your psyche that you’re giving them access to, so it has to be a healthy relationship.
Brianne: Yeah. Yeah. It’s not worth it to spend your time and quite possibly your money and your energy on somebody that is just a bad fit. Definitely.
Michelle: The work that you do offering podcasts is really helpful, like find the access of your group. Certainly I’ve got a whole lot of videos on my website where I talk about what is a healthy warrior when you’re having an illness experience or how to have conversations with boundaries. There are resources. Yes, it’s not really up and out in the world, in the mainstream, but there are resources for you. You are not stuck.
Brianne: Yes. I love that. I think that’s a perfect place to actually wrap up.
Michelle: That’s fantastic.
Brianne: Yeah. Thank you so much for taking the early morning for you, it’s dark here for me, time to chat with me. I’m so glad that we had a good day to connect, and I’m excited to share it. Thank you.
Thank you for listening to episode 63 of No End In Sight!
You can find Michelle on instagram @michelleirvingmelbourne and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod.
And if you’ve been enjoying the show and you also have a few bucks to spare each month, I’d be so grateful if you became a patron of the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, I’d be just as grateful if you left a podcast review on Apple Podcasts/iTunes.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.