Michelle lives with her own chronic illness and is a chronic illness coach. Michelle shares her perspective on gaining acceptance and explains the emotional stages of chronic illness, from the uncertainty of pre-diagnosis to finding a new normal.
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Peta [00:00:02] Hello and welcome to the I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have Michelle Irving on the show. Her perspective on acceptance and moving through the challenges that chronic illness brings up. I found to be really helpful and insightful, and I hope you do too. If you ever have a question for a future episode of the podcast or want to suggest a guest for a future app, all you have to do is contact me via my Instagram. My handle is at Peter Hook or send me an email at I Can't Stand podcast at AJ Malcolm. Let's hand over to Michelle.
Michelle [00:01:04] Hi, Peta. My name is Michelle Irving, and I work with women in particular who are living with chronic illness, including people like me who at times have been in bed for many, many months. And I'm sure we'll get into it. But I can't stand is also part of my own personal experience.
Peta [00:01:26] Getting started going from the very, very basic. If people don't know anything about chronic illness, what is chronic illness, Michel?
Michelle [00:01:36] For me, chronic illness is an experience where you have a long term health condition that you may have capacity that differentiates between different days. So to be practical with this, one of my chronic conditions is I have a vertigo condition. It's treated with medication. I've had it for about seven years now, and when I first got it, I had Vertigo 24 seven. I would wake up with it, I would go to sleep with it. I would not be able to watch TV. I couldn't read. I couldn't stand. I couldn't really have people visit me because it would just aggravate the vertigo. That condition with medication very, very slowly has gotten better. I will still awake once or twice a month with vertigo, and I know what might activate it, but it can be very random. And so chronic illness is really any sort of condition that impacts you in that way. It can be physical. It can be mental. And it's really where you've got other symptoms that you know are there and are ongoing or it can be dynamic. There was a time where I also have an autoimmune condition and I was in bed with treatment in a very serious way for many months. What happens when you have chronic illness is because it has an illness in the name. Basically, you always think that you're going to get well. Everybody else thinks, Oh, you're sick, okay. When will you get better? Or Here's how to get better. But the notion of chronic illness is that that may not happen or it may be phased. And so there are times where the conditions I have are disabling. And I think of them as dynamic disability. And that term was really brought to light and used by Brianne Benness, whose podcast is No End in Sight. And I just want to acknowledge her because what she's done in the community is extraordinary.
Peta [00:03:49] And I think that also goes to it being an invisible yes in many times. And just like many people I've spoken to on this podcast who have invisible disabilities, it can be really challenging for people to understand what is actually happening and how to deal with that.
Michelle [00:04:08] Yes, 100%. On one level, there was benefit to it being invisible to me in that I could do my best to hide it. The con is I could do my best to hide it. And I was still having symptoms. So it's sort of a pro and con experience and you have to work out where you are and what you share when you share it, who you share with, and how do you explain it without apologising for having an experience.
Peta [00:04:40] So can you give me an example of when you would want to hide it?
Michelle [00:04:44] I can. So I going to an office, particularly when I was recovering with the liver, autoimmune condition and medication treatment. I remember when I first got the diagnosis, I had a colleague just come over and whisper to me because I had disclosed it was an autoimmune condition affecting my liver. And she said, Are you an alcoholic? Do you need help? And I was like. One of the advantages of it being invisible is I got to decide who to disclose with. I get to choose who to trust. And that's one of the reasons that I would. Yeah, enjoy that invisibility is that it was up to me to decide who I disclosed with how, when and why.
Peta [00:05:43] For people who don't have much background in chronic illness or don't know anybody who has it. Do you know how many chronic illnesses there are?
Michelle [00:05:52] What's interesting about statistics is that the Australian Bureau of Stats, where most people get that data from, doesn't include a whole lot of autoimmune conditions or a whole lot of other conditions. They basically identify ten basic chronic health conditions which include stroke, which include rheumatoid arthritis. But both of my conditions would be invisible to the Australian Bureau of Stats. I think the work to do is for those of us who choose to do it, is to be visible about it. Speak up about it in an empowering way and I think learn and share together with the disability community and work out how we integrate where we're allies, what things we do together. But we really are all part of one bigger community, which is why I talk about chronic illness and disability.
Peta [00:06:52] And when it comes to being an employee, obviously you don't have to inform an employer anything like I don't necessarily have to tell them I have a disability, even though it's very obvious. But how do you advise people go about talking to their employer about their chronic illness? If they choose to.
Michelle [00:07:12] You are entitled to have accommodations within your work. And I would absolutely suggest if you are living with a chronic illness that is deeply impacting your capacity to say, be in an office, that you look at it as a disability. Even if you think about it as dynamic disability. You explain what that means in that it can flare. Sometimes you have capacity, sometimes you don't. The second thing is that you talk about having that you take medical advice and you have a conversation with your GP and doctor and you get a letter that writes out what the boundaries of the capacity of. The third thing about that is that I am talking about what I can do, not what I can't do. So I can absolutely right that report. And I will work from home to do that and I will be able to have that within 2 hours to you in the morning. My capacity in the afternoon is best suited to research, report or research work. And then what I'm doing is I'm gently educating the person who's the manager, because mostly the manager will be a person who probably has never manage somebody openly talking about their chronic illness. They're anxious about performance and getting things done. So this is a conversation about how the optimal performance for me works.
Peta [00:08:44] Part of this podcast is also me learning with the audience. And I want to know from my own knowledge, if somebody in my life tells me, Peta, I have a chronic illness, how can I best support them? Like, obviously in my mind from I'll say, a non educated point of view because I'm learning from you as I go that I would deliver soup on their front doorstep and text them and say, I've left soup on your doorstep. Obviously, half the time I can't come in because there's a step or whatever by default. But what other things could we do as supportive friends and family of somebody who has a chronic illness?
Michelle [00:09:26] The number one thing, the most helpful thing a girlfriend of mine ever did for me was instead of try this diet or she'll ever do, you need to eat more greens. It's like, No, it's a protein in my blood that's attacking my liver. It has nothing to do with how much spinach. All of that unhelpful people trying to be helpful but unhelpful. A girlfriend said to me, I don't know what your experience is going to be in this. And I know that it's really hard and I am 100% here for you throughout this experience that you're going through. And I am with you. There's a point in a friendship, at least, or any relationship at work where I have to say my immune system suppressed. I cannot see you pre during or post for a while with any virus called COVID condition or my immune system suppressed. So for the people who go to the office with the cold, I would always say, okay, so so-and-so is made the choice to come to the office. It's cold. I would go to my manager and say, I need to go home now and I'll come back when it's clean. And that's that's a health choice because I'm not making it out of an emotional choice. I'm following medical advice and I'm making a medically responsible health decision.
Peta [00:10:56] It's not personal. It's it's practical
Michelle [00:10:59] It's practical because if I'm sick, I'll be sick for three months. That's just the reality. If I get a cold, I'm down for about three months. I always say make a list of what's actually helpful. Right. If soup's helpful, put soup on the list. If soup is not helpful because you can't hold the spoon or it doesn't work, say to people, this is what's actually helpful. A salad is helpful. Or, you know, could you get fresh oranges and maybe make a fresh juice? Give them a list. When I was in bed with Vertigo 24 seven, I would have a rotation. I couldn't eat. I couldn't suddenly I couldn't do my laundry. I couldn't clean the house. So I made a list of what was helpful and a visitor might arrive and say, What could I do? It's like, could you take the washing to the washing machine and turn it on? And then the next visitor might arrive, say, in the afternoon, What can I do? Could you get the washing out of the washing machine and put it in the dry? I'd like people happy to have practical things to do. So that's what I would say, is ask the person what's actually helpful for them and don't make 10,000 offers. Just say, is there anything I can help with, with food or with chores? They do want to help. And so let's harness the helpful energy. The person with the unsolicited advice is not the person to take you to the doctor. That's not the help. That's not a great place for that person. That person's really great at doing the laundry. And it's not about hierarchy of tasks. It's just all of these things need to be done. So work out for yourself. Who actually is the most useful for you to help with the task, not whose feelings will be hurt?
Peta [00:12:51] So tell me more about your work as a chronic illness coach. How do you support your clients in what you do?
Michelle [00:12:58] There is a huge emotional and mental drain and impact when you live with a chronic health condition. And my focus is on helping you navigate that in an empowered way. One of the things I've worked out is that I've built an emotional map with the four emotional stages of chronic illness. And what that shows you is that there's actually different emotional places that you will go to throughout the physical experience and then how to navigate each of those places emotionally in an empowered way. So the first stage is pre diagnosis. You may or may not have a diagnosis, but your body has started to not do what it has always done. And you're definitely getting symptoms and you do not know what's going on. This is I likened to being out at sea. You're out in the sea of the unknown and you don't know what's going to happen. And that's an emotional stage as much as it's a physical stage. Often what we try to do in this stage is we're like, okay, I'm out at sea. I might be in a little boat. I cannot see land. I don't know what's happening and I don't know how to manage my life at this point. So I'm going to spend all my energy trying to work out how to make an income, how to organise my career, how to do all my social things while I'm actually physically have the least capacity. And what that does is add tremendous emotional and mental strain on your experience. What you're supposed to do when you're out in sea and you're in the unknown and you don't know what to do, is work out what would help you in that experience. And often that's working out who can help me get food? What do I need at my bedside table? How do I get to appointments? What is it I need to do to manage the experience I'm actually in? Not the experience that will come to me in three, four or five months time. And so if you understand that this is an emotional stage as well as a physical stage, you want to turn your emotional energy into something that's useful. Suspend your time working out what actually helps. The second stage is that it's almost like you wash up on the beach because you've got a bit of treatment. You might have a bit of idea of where this is going. You might have a bit of more capacity. And at that stage, a washing up on the beach is usually the time where everybody goes, Oh, patient in crisis time over. Right. See you later. And everybody disappears. Whereas actually, you need almost more help at this stage. You have capacity to do some things. It's probably minimal, but you've got an idea of, okay, I need to go to my doctor's appointments once a month or this is the medication or this is now how I get groceries. And what happens once you wash up on the beach because you've kind of got land. You said all the emotions and your identity and some of the grief from being at sea starts to emotionally wash over you. We're trained in our society to think that productivity is the definition of human value, and it is not what you are doing when you're going through a deep health experience is that you are having an experience where the things that you have known, your sense of self, your identity are all stripped away and you're left with the core of yourself. And you may never have had a chip to the core of your self. But actually, when we are with the core of ourselves, we can find our heart. We can find our intelligence. We can find our creativity. We find our strategy. So the next stage is that you're moving through the forest and you've got a bit more capacity, and now you start to make a lot more choices. Choices about identity, about work, about relationships, about who we socialise with. And the final stage is where you have your new normal and that's where you sort of return to the village and you sort of start to like, work out emotionally. This is what my life looks like. This is how it works for me. It is not accepting that you won't ever be well, and it's not accepting that you won't ever feel good about yourself. It's not accepting that your creativity, your intellect, the beauty of who you are is over. That's not what's happening. What you're accepting is that you're in a deep emotional dive into yourself and you are working with your self to find the ground of your own personal power. Most of the time when we're going through the experience, we're apologising for being unwell. You're in a body. Bodies have a biological. They break down. That's what they do. Like, that's what they designed to do. And so if you accept that, it's like there's nothing to apologise for. You live in a body. This is the experience of being in a body. And these are the things that you can do. And you can focus on the things you can do. And the beauty of what you have to share.
Peta [00:18:21] How do you view the future as somebody with a chronic illness when you don't know what's ahead and you might feel like this is with you for a long period of time or lifelong?
Michelle [00:18:35] We often cut off our longings because we have too much grief to actually hope for something in the future. And I have found for myself and in working with people that the longings become your compass. They may look different to the way that you thought they might come to fruition. And an example of that is I really thought when I was younger, I'd love to be Oprah. I would just love to chat to people and give them optimism. Chronic illness comes along. It's like, okay, what have I got and how does it work? And I felt that time was over and I was never going to be able to be a counsellor or fulfil that experience because I was in bed and I couldn't read anything, I couldn't watch anything. I could barely speak to anybody. However, it was not the end of the story. And so all we are looking for is to know what the longing is and then find a creative way for that to be expressed. Nobody in the world says I'm going to be a chronic illness coach. That is the best job in the world and I'm going to do it. And what do I have to do? What are the qualifications? And yet it is my soul's work. It is work that brings me joy. It is the gift of my life. And it's the same essential skill that I recognised in my 20 years of wanting to support, care and share. It's just now it gets expressed in this way.
Peta [00:20:08] Thank you for listening to this week's episode. I hope you enjoyed it if you did. Like always, I'm going to ask you to leave a rating and review. I know I'm super repetitive, but it is really important to help the podcast grow and more people find the podcast. Thank you so much for listening and until next week. Have a good one, guys. Bye. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the pioneering people where this podcast was recorded.