Full transcript of 'ME - The Movie' - 9 November 2017.

This is a full transcript of 'ME - The Movie' as presented by Natasha Lipman and first broadcast on 9 November 2017.

NATASHA - Hi, this is Inside Ouch. I'm Natasha Lipman. If you're streaming this interview over the web please subscribe to BBC Ouch as a podcast wherever you usually get your podcasts from. You'll get An awesome new dose of disability appearing in your feed every single week.

I'm here with you today instead of the usual Ouch team because I recently had the pleasure of interviewing Jennifer Brea. Jen has ME, which you might know better as chronic fatigue syndrome, and it's something that I've also had for a number of years as has my mother, and my brother has it a little bit too, so it's something that I'm very familiar with. She's recently released a film about the condition called Unrest. A few weeks ago Jen and her husband, Omar, popped over to see us at the BBC to talk about their story. She describes her current health situation as being like a battery which only charges about 40%. I'm also not feeling so great at the moment, and you can probably hear it in both of our voices as we chat.

As the opening credits roll on the film we see Jen lying on the floor completely unable to move, and her arms are shaking as she tries to pull herself up. It's a situation that I've been in more times than I would like to count and it's something that I think is very familiar for a lot of people with chronic illnesses. I started by asking her why she turned the camera on herself in that moment.

JENNIFER - In that particular moment I had gotten up and tried walking to the bathroom, and I made it there but on the way back I just had that sensation, that premonition of 'oh my gosh, I'm going down!' I have these moments where I lose all muscle force and literally won't be able to lift my head or move my body. Omar was downstairs and I could hear him talking to someone but I was too weak to even call out and so I did what I often do when I am in that state, I had my phone with me and I just started recording. And in that moment it was just because I was bored [laughs] and I didn't know if I was going to be lying there for ten minutes or an hour before I was found, so I decided to document it.

NATASHA - And at that point did you know what was wrong with you?

JENNIFER - I initially started filming very soon after I was diagnosed with something called conversion disorder, which is basically a modern-day name for hysteria. And I started filming myself because when I first became bedridden with ME I didn't have a diagnosis and had no idea what was happening to me and had also lost the ability to read or write. And I was someone who had always kept a diary and used writing as a way of interpreting my experience and observing the world, and suddenly I didn't have that medium accessible to me anymore. And I think in those early days I had no intention of making a film. I really thought, 'well I want to document what's happening because maybe one day I'll write about it'. And it was really in that, those times I think for processing that fear and grief and anger when I didn't know what was happening to me and started to realise that I wasn't going to find any help in the medical system.

NATASHA - And how did that feel when you were essentially diagnosed with hysteria and you were going to all of these doctors and you still didn't know what was wrong? What was the process of that?

JENNIFER - This all started with a high fever. Omar and I actually both got a virus and he got really sick and recovered and I didn't. And very soon after the fever I started to have these strange neurological symptoms. Over the course of the first year I had what was, looking back, a mild case of ME. So, I was pretty functional, but every time I would get a sore throat or a cold or some kind of minor illness I would end up being crashed in bed, but I would only really notice my ME when I would - and by that I mean problems that we have with exertion - when I would stretch myself to the limits of my physical capacity. So, Omar and I always used to do this bike ride along the river, six miles out, six miles back, and I would notice well, I could make it to six miles but then I had to call a taxi to get back home, or I would go skiing with my family and only last the first four hours of a weekend-long trip and suddenly feel my legs giving out and I didn't know why. I kept going to my doctor saying, "I think that's something's wrong with my immune system" but because the lab tests always came back normal I was told that either I wasn't really sick or eventually that maybe I was just depressed or that it was all in my head.

NATASHA - And how did that feel?

JENNIFER - At first I still had hope that maybe I just have a rare disease, something that my doctor had never seen and that if I could just get to the right specialist they would figure out what was wrong with me. And I think that once I came to become diagnosed with ME and realised actually I didn't have a rare disease I had a very common disease - this is a disease that affects over 250,000 people here in the UK, over a million in the US, and 70 million around the world, so it's about twice as common as multiple sclerosis - and understanding that I could have something that was that common and yet that hidden I think it was really difficult to deal with because I came to understand that because of the lack of research and the lack of investment in finding treatments or answers for patients my chances of treatment and recovery were actually quite small. So, I think that was really the hardest thing. In some ways getting the diagnosis was a bit of a relief but also it gave me the sense of: oh my gosh, what I have to deal with is actually much more complicated than I imagined.

NATASHA - The thing that probably made me cry more than anything in the film, which as I already said a lot, was watching how you developed your relationship with Omar throughout your illness. Why did you feel like you wanted to share those moments on film? And what was the hardest scene for you to watch back now? And I'd open that up to both of you.

JENNIFER - I got sick right as we were getting married, so for many of the questions that I was facing we were really facing together of sort of: what would our marriage look like? We'd met each other, we'd been looking our whole lives for each other and expected we would have this amazing adventure of travelling together and starting a family and we were just so excited to begin that journey, and suddenly all of that was just ripped away from us. And so I was very conscious early on that chronic illness is something that happens not just to the individual but to everyone around them. That always really interested me in how it affects relationships and the ways in which it can either forge you and bring you closer together or rip you apart, and also in some sense to make a more broadly relatable story.

OMAR - I think the hardest scenes for me are the ones where she's crashing and I'm sort of taken back to these moments where we go from some moment of possibility, maybe we're out and doing something together or we're spending time together, and then she hits the ground. And it takes me back to these moments, particularly early on when we didn't really know what was going on, and the struggle was much more terrifying because at any given crash it wasn't clear: was this like a permanent rationing down of her capacity or is this just a temporary moment?

Those experiences are just visceral for me and even though we've been through that cycle hundreds of times now watching it on screen still pulls the rug out from under me.

NATASHA - And probably one of the most frustrating things about having an illness or a disability is that people seem to view the partners of those people as somehow exceptional. It's like someone who isn't the perfect vision of health is inherently undesirable. And it seems to be something that's played out in the feelings of guilt that you show about your relationship and how you can be a partner to Omar, and it's probably one of the most touching parts of the documentary. Why do you think the feelings of guilt are so pervasive?

JENNIFER - Obviously this is not something that I chose or had any control over. I am the one that has been sentenced and confined to prison, and then here is this person that I love who sort of said, "I'm going to enter that cell with you and live it with you". And it's so hard because he has a choice and he can choose to live as a healthy normal person and travel the world and do whatever he wants with the freedom of the body that he has. And I think it was this recognition that in some ways watching him take care of me and look after me every day and bring me food and not go out and kind of live in that same space with me that that was in some ways limiting his possibilities.

What a lot of care givers often say is that they become homebound to due to the illness because of the time and investment that they have to put into their loved ones and so I was very conscious of that. Before we got married I didn't have a diagnosis but I was sort of on that path of becoming more and more ill, and the symptoms that I was experiencing were so strange and so severe that even though I didn't know what I had I had the sense of: this is not going to be simple; this might be lifelong. And in that uncertainty often said to him, "You don't have to do this; you don't have to stay, because I know this isn't what either of us expected for ourselves".

I think the guilt really does come from this feeling of that even though I didn't choose this in some sense his life has been altered because of this thing that has happened to me. And there's nothing I think more devastating than to feel like you're hurting the person you love most.

NATASHA - And how does it feel to hear that from the person that you love the most?

OMAR - There have been times where, particularly in the beginning, this was terrifying, and Jen was not just sick but some of her personality was draining away: she was bedbound, could only watch movies on her laptop, and the person I'd fallen in love with I felt was sort of fading before my eyes. That was scary, particularly early on in our relationship where it was like: is this going to be decades of somebody who's a shadow of her former self?

Part of the gift of our relationship though that we both have been not always at the same time but across this last five and a half years optimistic about being about to make progress. Our optimism basically carried us through even when the times were tough and even when there were long stretches where there wasn't progress being made. And I might have been down sometimes and she brought me up or vice versa, but we were able to sustain each other and then to make some progress, and that meant that the person I fell in love with came back in some way.

And at some core level the gift of our relationship is not her being able to travel or go skiing or biking - I mean, those are things we love to do - but fundamentally what I get from our relationship is her company and being able to talk to her. Even if her body isn't quite what it was the fact that her mind is as sharp and vibrant and interesting as it was when I first met her means that I still feel quite lucky.

JENNIFER - There are definitely days when it does not feel like my mind is so sharp! This being one of them. [Laughter] Omar is amazing and exceptional and I'm pretty fond of him. And at the same time he shouldn't be, right? A part of how people perceive us is gendered in the sense that if he were sick and I had stayed to care for him I don't think people would look at me as a hero. But because he's a man and he's here and he's so loving it's exceptional.

NATASHA - You see quite a lot about motherhood in the film and what it's like to not only need to be cared for, but when you're the parent that is supposed to care for a child, and there was a lot of grappling with that in the film. And how did listening to their stories change the way that you felt about motherhood and the role of the carer of someone who's ill?

JENNIFER - In the film we meet Leeray, the mother whose husband leaves and her daughter Casie, and we also meet Jessica, a young woman in Kent, she's been bedbound for over a decade. And I think really I was someone who was at the very beginning of my journey, and it was in talking to them and learning about their experiences that I began to see: oh there's life on the other side of this.

When you become disabled I think there is a grieving process that all of us must go through and a process of learning how to say goodbye to the life that we had and the expectations that we had for that life. There's a possibility that on the other side of that grief you can find reinvention and you can find hope. In those stories I found that it is possible to live a life with meaning and purpose even if you're bedridden, that it is possible to be a mother and to be a very good mother even if you're bedridden. And we place so many judgements I think on people with disabilities and in particular on parents with disabilities, and what she says in the film, Leeray, is that, "Even though I couldn't be there for the baseball games and the graduations and all of these moments where I would have wanted to be there, every single day that my kids came home from school I was there and I was there to listen to them and I was there to be with them". And what you see and what I experienced in talking to them was a family that's just really tightly knit and a kind of relationship that I think is much closer because of the illness because it had to be.

NATASHA - We do tend to see health and illness and disability as really binary: you're either healthy or you're sick and you can't do anything. And for a lot of patients with something like ME or invisible conditions you are somewhere in that middle. So, once you go through that grieving process and once you are in a place where you can try and figure out how to live a life as such how do you go about doing that and finding that purpose and finding the ways to do that when most of the medical options are very focused on treatment as opposed to management?

JENNIFER -There's sort of like a medical model of disability and then a social model of disability where the medical model is very much focused on trying to make you as normal as possible, and the social model is focused on: okay, given that I have this disability how do I manage it and how in some ways can the world adapt so that I can live to my fullest? I find those in some ways false categories, especially rather a false economy when it comes to chronic illness because when you're sick all you want to do is get better and so at the same time while you're sick you want to live the best life you possibly can.

And so I have had to try to find a way to both fight for and hope for and strive for better treatments and hopefully one day a cure and to keep pushing for that, at the same time to find a way to be happy and live the fullest life I can where I am, given that I don't know what the future holds. And I think for me a large part of being able to do that really has come from the connections and the friendships that I have developed with other patients, because when you are trying to keep up with the world's pace when you have a condition like this I think it can be incredibly difficult to try to do it, but also really hard when you're sort of measuring yourself against the main. But now given that so many of my friends are other patients with ME it's sort of like our bodies are strange [laughs] but we all understand each other and we understand how they work and we will text each other to make plans to talk or to get together an hour in advance and that works for everyone extremely well and we're all very understanding of each other's limits. I think it's really been that community that has helped me the most to reframe this and to find meaning and purpose in our support of one another and in fighting together for a better future.

NATASHA - In terms of making the film accessible for people that can't come to your screenings or can't get out to cinema you're doing something to make it available to people who are housebound.

JENNIFER - We're having a traditional film release where we've gone to festivals and now we're doing our theatrical release, and then the film will eventually be available digitally. But I really wanted to make sure that homebound audiences could have a communal experience of the film during this theatrical period. So, if you live in a city where the film is screening there are a number of virtual screenings that will happen simultaneously to the in-person screening. So, you can buy a ticket to attend a screening in a virtual cinema.

NATASHA - If you could tell yourself anything when you first got ill what would it be?

JENNIFER - Listen to your body. Listen to your body. I knew not only that I was sick but I wish I had understood how much exertion was harming me and that I had pulled back. I think if I had rested, I had completely rested right after my infection I might have recovered. I think that rest and that pacing is your best chance of recovery at the beginning. So, those signals of pain or fatigue are your body trying to tell you something, so I wish I had listened to myself.

NATASHA - Thank you. Thank you so much to Jen Brea and Omar for being with us. I wish everyone could make their film so accessible so that I could actually be part of the world a bit more and not feel like I was missing out on culture and all of these exciting things when I'm stuck in my bed.

This has been Inside Ouch. I'm Natasha Lipman. If you have any comments, questions, suggestions or anything else that you'd like to say you can contact us by email on [e-mail] or you find us Twitter and Facebook @bbcouch.