On Sunday I sat down and finally watched Jennifer Brea’s film ‘Unrest’.It’s an amazing film – genuine, moving and just thought provoking. It’s her life and the life of other CFS/ME sufferers with no frills. You see the good days – the days when she finds energy and is able to attend a College reunion and then the fall out of those days when she is unable to even walk up the steps of her porch. It shows CFS/ME as what it is – a condition that removes so many people from their lives and is still hugely misunderstood by many medical practitioners.
This film has been out for a while now. I found out about it on Twitter quite a few months ago. I liked all the tweets, was happy that someone had made a film to highlight the condition and how people with CFS/ME are often mistreated by society and thought that I should watch it. But somehow I couldn’t. It came to our local independent cinema a few months after release but when I checked out times it was only on at 8.30pm (possibly not a great understanding there that people who might want to see this film might also have issues with managing to be out at that time of day!). So I didn’t go and a part of me was relieved.
I knew deep down what the problem was. Here comes the honest, soul searching and to be honest bloody hard to write stuff.
When I was diagnosed with Breast Cancer I was reassured from early on that it was low grade, low stage and fully treatable. Initially this kept me going –the belief that everything would be over and I could go back to normal. Then the fatigue kicked in along with gynae problems and surgery, fear that the cancer would return, genetics testing, anxiety, poor sleep, inability to work. The list goes on. The promised return to normality hadn’t happened and at that point the very diagnosis that had reassured me became the focus of my anger. Not in any way that I wished for a worse diagnosis – I remained grateful that I hadn’t had to have chemo, that I’d had a lumpectomy not a mastectomy, that I could take tamoxifen, that I had already had my children and most importantly that my girls still had a mum. But on some level I blamed myself for not coping better with any of it. I’d been told that everything would return to normal and it hadn’t. So surely with such a treatable and low grade cancer the blame could only be mine. This belief became a real struggle for me. I joined an online breast cancer support group Younger Breast Cancer Network UK which was full of amazing women who had all gone through a breast cancer diagnosis before the age of 45. It pulled me out of what was a pretty bad place and the support that I received there was incredible. Yet I always felt like I had no right to be there. That my problems were nothing compared to what many of them were going through. This constant comparison and self-doubt was exhausting and on a number of occasions I left the group feeling that I could never contribute with the right words or support when members were struggling. Not wanting to post about my problems which felt so small in comparison to what others were going through. If I’d actually said this – I know that umpteen members would’ve been there immediately to reassure me but in what was the most open, honest and safe space I’d found it still didn’t feel safe to say it.
So fast forward to the fatigue. When this kicked in and it became apparent after a number of months that it wasn’t going anywhere, I did what most people do and I googled. I came up with the term CFS/ME along with information and stories from people living with the condition. The thing is though that most of these stories described a period of being totally bedbound, of not being able to bear the smallest light or sound, of basically ceasing to function on a basic level. Yet my fatigue wasn’t like that. Sure I’d had days where I’d found it hard to get off the sofa and my tolerance for any form of exertion – physical or mental was massively reduced but not to the extent that these people were describing. I didn’t fit into the picture. See where this is going?! For ages I was convinced that I couldn’t have CFS/ME simply because it didn’t fit. I kept reverting to the old term Cancer related fatigue. But yet again this came with my inner critic nagging that if I wasn’t recovering from this fatigue it must be down to something I was or wasn’t doing. When I finally received a diagnosis of CFS/ME in January 2016 I had a short lived respite from the self- battering. This was a real condition, that was long term and actually had a name. The weirdest form of reassurance!
Yet with this label came the opportunity to research and read how the condition affected others. The more I read about how badly some people were impacted by CFS/ME the more I yet again turned on myself. Thinking about it now I think the main problem was that I focused on the physical symptoms. On the fact that I could still walk for a fair distance, I could still do yoga and stand for periods of time. I focused on the visible signs that everyone else saw. Yet what I really struggled with was cognitive and emotional energy use. Reading, writing, computer use, being in crowds, in noise, in harsh lighting, chatting to friends. This was my CFS/ME . These were the invisible symptoms. I even got to a point of finding a level of comfort when physical activity was an issue. Because if the fatigue kicked in it made me feel that maybe I did fit the CFS/ME criteria after all.
So this is why when the film ‘Unrest’ came out I couldn’t watch it. I knew that it would just bring up more self -doubt and comparison. I’d end up beating myself up for struggling with a condition that could’ve been so much worse. Criticising myself for not being grateful. Doubting whether, in the absence of these extreme symptoms, I actually had CFS/ME. Maybe it was all in my head after all. I wasn’t at the point of being able to do anything about these thoughts but at least I knew that this was going on. I knew not to put myself through watching it.
So how did I manage to sit down on Sunday and watch the film? How did I finally get to this point? How did I feel moved, informed, interested, shocked, tearful, but no longer self-doubting or self – critical?
I now realise that actually the first step came 2 years before the film release when I attended a three week residential Fatigue Management programme with a group of other CFS/ME/Fibromyaligia sufferers. They were real people with real lives and they all had different stories. Their pain/fatigue had all been triggered in different ways. They all had different symptoms and the path of their condition had all taken different routes. At this stage I had a small realisation that this condition was unpredictable and different. The seed had been planted but the belief wasn’t yet strong enough to shout down the story that I was telling myself about my own fatigue.
Then in April 2017 I attended a three day course in London with the Optimum Health Clinic. At some point during this 3 days, or maybe it was in the literature that accompanied the course, someone said that there are as many different forms of CFS/ME as there are people who have it. That understanding from back in 2015 now started to grow a bit. Just because mine was different it made it no less real. I don’t think that this on its own would’ve been enough though. Not for such a real and deep rooted belief. But on day 3, feeling safe and among people who ‘got it’ and who I knew wouldn’t judge I actually asked the question. The answer came from the lead practitioner that some people just don’t experience what they call Stage 1 of CFS/ME – the crash stage. They go straight into the 2nd Stage when their system is wired which then impacts on so many of the body’s functions. When I heard these words the tears came. I finally felt reassured and genuine. This is their understanding of the condition based on helping 1000s of CFS/ME patients who all have a different version of the same condition. Some people would undoubtedly disagree but to me it makes sense and most importantly it allowed me to finally start to come to terms with what my body was doing and how CFS/ME had affected me. It still didn’t happen instantaneously. Even with this reassurance it’s taken a number of OHC Nutrition and Psychology calls, various lightbulb moments and a gradual increase in my understanding of why my body is doing what it’s doing for me to get to a point of acceptance that this is my CFS/ME.
So when I watched ‘Unrest’ on Sunday I did it with feelings of empathy, of understanding, of sadness and of anger at how people with the condition are treated. But I didn’t in any way feel that I had to validate or compare my own CFS/ME. My CFS/ME is different from anyone else’s. It is certainly not as severe as many people’s and has not impacted some forms of physical activity as badly as it could’ve. The gratitude I felt watching the film was huge. Gratitude that I can still go out for walks by the sea or in the countryside. Gratitude that I can still see friends. Gratitude that I haven’t been confined to the four walls of my bedroom. Gratitude that I can still go out with my family. Gratitude that I was able to go with my youngest daughter to buy her prom dress and with my eldest daughter to buy her wedding dress. Most importantly, I no longer listen to that inner critic voice when it tries to compare, blame or belittle the impact CFS/ME has had on me and on my family. It’s real. It’s here. It’s mine. Acceptance of that is huge.