Grief and Chronic Illness: An Unwanted Companion (E13)

In this deeply emotive and personal episode, Alex shares her experience of grief and chronic illness following the sudden loss of her father. She discusses the importance of understanding how the two can affect each other and offers insights on self-care and rebuilding life after loss.  By highlighting the impact on her work, the importance of self-care, and the transformative power of grief Alex emphasises the need to actively choose to live and thrive.

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Transcript

Hi, how are you? Thank you so much for joining me today. Today's episode is a very different kind of episode. It's something that I've wanted to share with you all for some time and I've been asked by close family and friends if I am going to share it and I think now is the time to do so. Today's episode is emotive, it's complex, it's complicated and it is sharing something of mine that is incredibly personal, and intimate and it is a time when I'm going to be extremely vulnerable with you all. Today's theme is all about grief and chronic illness and the importance of understanding how the two affect each other, and what you can do to look after yourself. And it's an opportunity for me to share everything that I've done and experienced personally that might be able to help you. So, welcome to episode 13 of the Chronic Illness Coach podcast. I'm Alex Morris, and I believe that chronic illnesses can be put into remission. Join me as I work to engage, educate and empower those living with a chronic illness to change their life for the better.

So today's episode,  the only place that we can begin is at the beginning of the story. It is now June and one year ago, in June 2023, I lost my dad. He died suddenly without any warning. He wasn't ill, he hadn't been diagnosed with anything, he wasn't fighting any kind of terminal illness. As far as we were concerned, he was an incredibly healthy, happy, active, fit man. He cared about looking after himself. He wasn't a big drinker. He didn't do drugs. He loved to exercise. He ate healthily. He had a real understanding of how to keep himself in good shape and he loved to feel healthy and to feel fit. He looked at least 10 years younger than he was. He had the nickname of Peter Pan where seemingly as he got older, he seemed to look younger.

And he had a dream and a determination to make sure that he would be skiing in the mountains at 80 years old. He is the last person you would ever expect to pass away so young and to have such an awful traumatic and tragic thing happen to him.

So we're about to reach a year. That's an incredibly difficult milestone. I'm not looking forward to that. It is not true that somehow after a year it gets any easier. If anything, I have a feeling that in some ways it's getting harder. It is not something that anyone who's been through this looks forward to. A year is not a milestone that you want to get to. But we'll come to where I am now in a little bit.

Where I need to start is probably by explaining what happened. I'm not going to delve into details. I'm not going to share anything too intimate because that is for me and my family only. We're the only ones that need to know that we were there, we experienced it. I will just share with you what I think is appropriate and will help give context to the situation.

Our life was completely normal. We were incredibly happy. I think we were very grateful. We were aware of how happy and healthy and a wonderful family that we had. We were the most incredible four, absolutely incredible four. We loved spending time together. We got on so well. We were genuinely happy to be in each other's company. It was easy. My parents worked their socks off to create a family unit that I think is as close to perfection as you could get. Nothing's perfect. No one's perfect. But my God, was it close? It was so close. And out of nowhere, over a weekend, our lives were turned inside out, upside down. And our life as we knew it was destroyed forever. We didn't realise it, but from the moment this unravelling of our lives started, it would never, ever be the same again.

When I think about it, the only way I can think to describe it is it was like a bomb going off. It's like in the films where there's some kind of catastrophic event and maybe a bomb has gone off and it's that slow motion. Everyone slows down and stops what they're doing. And there's this high-pitched ringing in the air. And you can hear nothing, but you can almost hear everything. It was like that.

We have spent the past year trying to piece our lives and ourselves back together one piece at a time. And we are doing so and we are continuing to do so, but it is a long journey and it's not something that will be done anytime soon. It takes a huge amount of time.

When we lost him, I had the opportunity, we all did, to go and say goodbye.

And that is the hardest thing I have ever done. I don't know if it's the hardest thing that I will ever do. My God, I hope it is. But you just don't know. Before we lost him, I had experienced things that I thought would be the hardest thing I'd ever do. I thought all the trials and tribulations I've experienced with chronic illness would be the hardest thing I'd ever do.

And I was wrong. I was completely wrong because we don't know what's around that corner. So, after a horrific, tragic, traumatic and shocking loss of my beautiful dad.

We were just in shock and you don't realize how long you're in shock. You're in it for months and months and months and it's not until you very slowly start to come out of it that you realize what your bodies and your mind have done to protect you and that you just go into a state of existence and survival for such a long time until your brain can slowly start to reveal to you the reality of your situation because if you were exposed to that straight away, we just, I don't think anyone would cope with that. It would be too much, too overwhelming for anyone to cope with.

After he passed away, we all wanted to be together as a family. We wanted to hold on to each other so very tightly. And there were very few places that felt safe and home was one of those places. And myself and my partner were living in a different house. We were renting and it was not somewhere I wanted to be. I found it very difficult to be alone for a long time. And so we all kind of bonded together and you just go through this autopilot existence every day. Understandably, we didn't eat properly, we didn't sleep properly, we didn't do anything properly for a very long time. Everything kind of went out the window and then they gradually, slowly piece things back together. But for a long time, we were just existing in this grey blob of a mess. And then probably the first proper focus that we had was to plan his funeral and to ensure that we marked an incredible man in the best way we knew how and in a way that I think he would have wanted and something that reflected him at his absolute core.

And I could talk about how I felt and this awful time for hours, but it's not the exact purpose of this episode. So I'm going to move to the first big thing that I think is important to think about in grief. And this applies to anyone. This isn't just about chronic illness. I'm going to apply it to that, but this is for anyone. The first thing was the fact that obviously with everything that happened, I was going nowhere near work. So on the day that I was making some of the hardest phone calls I've ever made in my entire life, I knew that I needed to tell work and my partner very kindly did that for me because actually in the nicest possible way, they were not the most important people that I needed to speak to that day and my capacity needed to go to those people. So he took that phone call and the phone call initially itself, you know, went fine. Obviously, for anyone who's a decent human being, they said what you'd expect. They said, we're so sorry, it's horrific news. We can't imagine what you're going through and do not worry about work for the time being. Just go and be with your family. Great. That's exactly what I needed and that's exactly what I did. And, I think anyone could agree, I couldn't care less about work at that moment. It was the least important thing going on in my life. So I forgot about it. And the period that we went through, the dates are messy. It's a bit blurry. There are parts of my memory which are a bit fuzzy, I think because of the shock and the trauma.

So I'm not exactly sure about the time scale, but I'll give the best memory that I can give. So about a week later, I believe, either I or they got in touch with them. And I think I got in touch with them and said, you know, I'm in no state to come to work. I have to be with my family. They need me more than ever. This has just turned our lives upside down. You know, I can't come to work right now. And I said I need to know what the policy is. I need to understand the bereavement policy so I can put some things in place to give myself some time before I then can come back to work and start to rebuild some form of normality. And it was disappointing, to say the least. Now obviously every company has a different policy. It depends on the size of the company. This company was small to medium. It'd been going for five years. They were growing at a really good rate. They were bringing on more staff. They were very successful. Their turnover and their profit were good.

They were expanding in lots of different ways. They didn't have enormous amounts of money, but they weren't doing too badly. And I asked about the bereavement policy and I found out that there were five days. I had five days of bereavement leave. Now I've worked for other companies of very different sizes that had a whole spectrum, some of which were fantastic, and amazing, some of which were middle of the row. This was the poorest I'd come across. This was the least generous, let's say that I'd come across. So I took the full five days, which doesn't even scratch the surface of what you need when something like this happens to you. And then protocol is I think when someone very suddenly tragically dies in a family, our GP rang our whole family and said, we're checking in, we want to do a welfare check, can we have conversations with you all? So I had a conversation with my GP.

And I was told that I was in no state whatsoever to go to work and I completely agreed and I was given a sick note for basically however long I needed it. And initially, it was just to get me past the point of the funeral, which was quite a few weeks away anyway. So that was a good chunk of time, maybe six or eight weeks. So I sent this to my employer and I said, my GP signed me off. This is the official sick note. I will now need to go on sick leave.

I got an email back, not from either the managing directors, but from someone who worked in finance that was an email that was safe to say, cold and difficult to receive in the state that I was in. And this email dictated that I had something like five to eight sick days left that I could use. And then I would be going on statutory sick pay. So I had full pay for a few days and then I was going on statutory sick pay.

Now, for those of you who don't know, I had around £400. This £400 was supposedly for my rent, my bills, my food shop and any other legal requirements or household requirements I had. It didn't even scratch the surface. And I can't imagine, I'm not someone with any dependents. I'm actually in a very fortunate position and I'll come onto that. But for those people that aren't in that position and have dependents and even more, things on their shoulders. I can't even imagine the stress it causes on top of this, this horrific situation that you're already in. And so I was not happy. I was angry. I was very, very angry, very upset. And I was an incredibly emotionally, I was in, and I was incredibly emotionally charged anyway. And I can appreciate that. I was not in the best state of mind when this happened, but I was still able to function. And, you know, I'm still a very intelligent, capable employee. So I was able to have those important conversations.

Anyway, it made me question my time at this company and whether I wanted to continue. Further down the line, just before the funeral, I went into this organisation and I sat down with the managing directors and I just said, look, I want to hear your side of it. I appreciate you've got a business decision to make. I appreciate this can't just all be about sentiment and emotion and individuals because you have a business and there needs to be business decisions. But there are two sides to this. I'd love to hear how you came to the decision, you know, your thoughts on it, and then I'd love to share my experience of this and maybe we can just look to improve the situation in the future or take some feedback on just something. 

So we had this meeting, and they explained the decision to me and the explanation was basically that when they first started the company, they had a third-party HR agency come in and set up this policy that's very basic and very average for any kind of startup company. And they hadn't looked at it once since that policy had been made, probably because they never thought they'd have to use it in such extreme circumstances. And you know, I understand that, of course, you would hope that this wouldn't happen to anyone that you know because it is horrific. And we all do sit there and watch things on the news or hear about awful stories and just thank God, thank God that will never happen to us or, you know, I hope that doesn't happen to us and we don't believe it unless it happens. And so they said their side and I listened and I then responded and I appreciate everything on the side of running a business and being a managing director and the pressures and the responsibilities of that. And I just said, from my point of view, you had said all the right words to me about how you want me here for years and to be part of the roots of the company and to grow with it and to develop and maybe one day be the head of a department and to really be a fundamental part of this company and to be here for a very, very long time, which I had intended to do.

And yet when push came to shove and when it came to putting money where your mouth was, those two things, those words and actions, they didn't line up. And so I gave my honest account of how I'd experienced it what I was disappointed and upset with and what I would love for them to improve in the future. And at the end of this meeting, I had the insight that it hadn't been particularly well received, but I had kept an open mind. At the end of this meeting, one of the managing directors turned to me and not in these exact words, but said, so are you leaving? Are you staying?

It was blunt, it was cold. It wasn't approached in a very nice way. And I said, well, I appreciate that you've got a company to run and I'm not going to mess you about. I wanted to have this conversation to kind of help me think about my future at the company and to just be honest and open with each other. So I will need some time to think about it, but of course, I'm not going to mess you around. And their response was something along the lines of, well,

I'm going on holiday for a few weeks, so when I get back, I either need to know that you're going to be in the office working or you will have left so I can get someone to replace you.

That was the sentiment. That's how it was left. So I said, okay, well, you've left me with a huge amount to think about. Thank you for your time. And I left the office. Safe to say, I never stepped back into that office. That was the last time I was there. And that is the last time I will ever be there. It made my decision very, very easy to leave. Now I'm saying this and I have a complete awareness that not many people are in the position where they can do this. As I said, I don't have any dependencies, it's just myself and my partner and I was in a position where I could go home and I could be safe in the home and there was space for me and they were able to support me for the time that I needed. I know that not many people can do that and I appreciate that and I respect that but for me, there was no way I was going to stay. There was no way I was going to experience losing my incredible dad and having my heart broken.

My world turned inside out and upside down and to stay somewhere where they were capable of treating their employees like that, for me crossed the line and it was a boundary that I wasn't willing to push, so I left.

Now, if I hadn't left, I wouldn't be doing what I'm doing now. So weirdly, it is a thank you and it is, I am so grateful that that happened as horrible of an experience as it was at the time. I'm so grateful that it happened because, without that, I wouldn't have taken the leap of faith and the jump and the risk to start this and to start the chronic illness coach and to pursue my dream of making a difference. It would have happened at some point, but the can would have been kicked down the road for a much longer period. So weirdly, it's a blessing that that happened. But it leads me to a really important point about a lesson that I've learned from grief. 

I started the Chronic Illness Coach and this business and decided to take this huge risk and leap of faith because I realized that there is nothing scarier in this world that I've experienced or can imagine than losing a parent so young. Now, that will be equivalent or similar to losing a partner or someone I feel very close to. I can only imagine that maybe potentially losing a child as a parent is even worse, even more painful. I don't know, but I imagine it could be. But for me, there was nothing scarier than losing Dad. It is the scariest thing that I've ever experienced. It is indescribable, the level of grief and sadness and heartbreak and the physical pain that you feel every single day that you can't see that person, speak to that person, hug that person.

There's nothing scarier than that. And it just changed my entire perspective on life. If I can get through this, if I can live with this, there can't be anything scarier than that. Starting my own business won't even come close to being this scary this difficult or this challenging. So why wouldn't I? Why wouldn't I take that leap of faith? Why wouldn't I jump off the cliff edge? Because falling from that is nothing compared to falling when you lose someone.

So after this, I and my partner, actually, eventually after quite a few months, moved back home. And in lots of ways, it felt like I'd gone from everything to nothing. And in lots of ways, someone from the outside potentially could have looked at my situation and gone, wow, she's lost it all. She's lost everything and she's completely started from scratch. It doesn't feel like that to me. In some ways, I feel like I lost everything because I lost the most important man in my life.

I lost the first man I ever loved.

And in that sense, that is losing everything. But in every other way, I didn't lose everything because I had the most important things in my life. I had my family close to me. I had a roof over my head and I had a loving partner. And after the trauma and the loss that we went through, that is all I needed. That is all I needed. And so, again, that makes you think about the perspective of life. What is important? What isn't important? My family and I talked a lot about this not long after he passed away. We had a real shift in ourselves where your tolerance for bullshit just goes out of the window. It's quite incredible. I couldn't believe how much more direct and intolerant of nonsense and silliness I was because it just changed my whole perspective on life. What is important? What isn't important? Are you allowing people in your life that you shouldn't be? Are you being treated a certain way? Are you doing something that doesn't serve you? All of that. You just suddenly have an absolute cutthroat, no-nonsense approach to it. And in some ways that's really refreshing and quite empowering.

And I think it's important that I move on now to the main message from this and why I'm telling you about my experience and what happened. And that is the link to chronic illness and that is the link to my body and my mind. So a few months after losing Dad, I started to get some horrible symptoms and new types of pain, which was scary and challenging. And another layer on top of everything else that we were dealing with, that was another very complicated layer. A long story short, I needed more surgery for investigations. So in February, I had that. And this sounds strange and it's a bit of a mixed bag as always, but there was some incredible news that came from that.

There was no new endometriosis growth. Now in all of my previous surgeries, my endometriosis has grown like absolute wildfire. But in this surgery, there was not one new piece of endometriosis. There was a lot of scar tissue, they're not quite sure why. There was a lot of scar tissue which could have been causing pain. And then there are some other investigations going on, which is a completely different episode that we need to talk about. But in terms of endo growth, that was the most incredible news and I thought about it and I thought, wow, okay, so since our surgery, you've upheaved your entire life. I've moved, I've left jobs, I've changed my lifestyle, I've transformed my nutrition, I've got rid of toxic environments and products, I've gone natural, I've changed my entire life in the past three years. And look what it's done. Look at the impact it's made. Look at what I've achieved. Look at what I've enabled my body and my mind to work together to do.

And that was just an incredible positive in such a dark and difficult time. And it hones down the point of this in grief with chronic illness. If you've got the fundamentals right, if you've built a sturdy foundation, your body is magic. Your body will look after you. Your body will be able to heal and do exactly what it's meant to do, even in the most horrific of circumstances. Even when for weeks and months you're living in shock and grief and trauma and you're unable to sleep or eat properly and you're just bogged down in so much deep emotion and pain that you're barely able to function. Even then, if you've got the fundamentals right, your body keeps going. And in my case, my body was able to prevent itself from the endometriosis growth, which is just huge. It's just mind-blowing and it's a real beacon of light in a situation that is so challenging and can seem so dark at so many times.

So why am I telling you this? Why am I sharing this episode with you guys? It's a really good question. And the main point and the main reason is because it is a huge part of who I am now. None of you know me.

None of you will ever know me before my dad died. You know, the chronic illness coach in this podcast didn't exist before that time. It's only ever existed afterwards. And who I am now is different. I'm still me. I've still got all the quirks attributes and qualities that I had before that my mom and dad instilled in me. I am still that mirror image of my dad, our humour, our passion, our drive, our ability to think of others, our generosity of spirit, our heart. I am still very much my father's daughter and his mirror image in so many ways, but there are additions when you go through such profound grief shock and trauma that are added onto you.

And I'm still me and I hope that my family and friends can see that, but it does change you forever. And so I share this with you because it gives context to who I am now. Our life experiences shape us. This is a life experience that I never wanted to have, but it's one that was given to me not out of choice.

And so I'm aware this is a very intense episode. It's a deeply emotive complicated and potentially triggering episode for some. And so every other one that I've done always ends with a message of hope or something or some kind of positivity. And I must stick to that because it's so important and it's part of my ethos and what I truly believe in. So how do I give that to you guys in this episode?

I think it's this, I think it's the fact that in profound grief, when your world gets turned inside out and your life is destroyed and you are sat on the floor looking at the devastation, looking around you thinking how the hell do I build this backup? You have to make an active decision. You have to make an active decision to live, not to survive, not to exist on autopilot, to live, to thrive, to acknowledge that you've still got the rest of your life ahead of you and it will look different and it will not be what you wanted in so many ways and there are things and people missing and experiences and memories that you've had stolen from you. But your life is still yours to live and you need to live it. You have to want to live it. You have to want to grab it with both hands and still feel it full of joy and happiness somehow. Maybe in a very different way, but still do it.

And if you, like I say if you've got these fundamentals right, if you're looking after your mind and your body, if you're self-aware, if you've got all the health fundamentals right, if you're self-disciplined, if you love yourself, you're kind to yourself if you're good with care and the care balance, if you're doing all these fundamentals, you will be okay no matter what happens to you, no matter what is thrown your way, you will be okay and you can survive.

And the sooner you start, the better. Start now. Stop procrastinating. Stop waiting. Stop waiting for permission. Stop waiting for the right time. Stop waiting to feel like you deserve it. You already deserve it. You've already got everything you need to get started. Don't delay it. Don't delay it. Get started now.

Thank you for listening. Thank you for your empathy, your sympathy, your understanding, your compassion. Thank you for being open to listening to this episode. We find it so difficult to talk about grief. We find it so difficult to talk about death. We are so illiterate and bad at these topics and we need to change that and we need to have these conversations more. I think this conversation around grief and chronic illness is something that I can continue and I can have more of in the future but it was a really good starting point.

When we talk about grief and chronic illness and loss and everything that myself and my family have been through, there is something that always comes to mind and it's the fact that to get through, whether you are someone going through or whether you are someone supporting, please always keep an open mind and keep an open heart.