Post Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/

 

Post Nineteen. Time For Unrest.

Unrest image.png

“A revelation and a call to action” – The Salt Lake City Tribune

“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story” – The San Francisco Chronicle

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

I have been awaiting the arrival of this film for some time. It has been a few years in the making but I only found out about it after watching Jen Brea’s TED talk earlier this year. Having already been screened in other parts of the world, and winning lots of awards on its way, Unrest had its UK premier just a couple of weeks ago in London. For those of us too unwell to go to our closest screening, we had the opportunity to pre-order the film online, and patiently, or not so patiently, wait for the 31st of October, the day of its release.

On Tuesday I was finally able to download it and I watched it in stages over the following three days. What can I say…

It’s beautifully made.

It made me cry and it made me smile.

I felt validated. So often people tell me how I should feel. That I have to be hopeful, that I can’t give up, that I have to believe that I’ll recover. Watching this film reminded me that everything I have felt since having ME, every emotion and every fear has been valid.

It made me feel sad, angry and frustrated. I felt moments of grief and moments of rage. I also felt understood, and grateful. I felt like I belonged, like I was part of a community, an uprising!

Unrest: a state of dissatisfaction, disturbance, and agitation, typically involving public demonstrations or disorder

The most surprising reaction I had to the film, was that I found it strangely comforting. I had thought it would be the kind of film that I would only want to watch once, that it would be too difficult to watch it on repeat. But I have already started watching it for a second time, and I think will watch it again, and again, whenever I feel a bit lost or disconnected.

My ME is not as severe as Jen’s was (while she was making this film), but it was all so familiar. The opening scene is very effective. I found myself holding my breath as I watched Jen try, with every fibre of her being, with every ounce of strength she had left, to lift herself off the floor and into bed. I’ve never, thankfully, been that disabled by my ME, certainly not for such a prolonged period of time. I have experienced that complete lack of strength, the extreme weakness in my body, when I haven’t been able to lift my head or my arms, or have lost the use of my legs. But I haven’t been as severe as Jen, in terms of, I am mainly housebound and am bedbound for at least half of the day, but Jen has been bedbound for months at a time.

When it comes to the ‘fatigue’ that people with ME experience, it’s this extreme weakness, this complete lack of strength and pure exhaustion that we’re talking about. It’s so far away from the myth that we’re ‘just tired’, I mean, it’s just nothing like being tired. It’s like referring to a hurricane as, ‘just a puddle’. It’s so insulting, not to mention factually incorrect, to conflate the two.

I’ve been thinking a lot about why we, the people with ME, have needed a film like this to come along.

It’s this idea that ME is just ‘being tired’ that drives the general perception of ME. It’s what many people think, until they get ME, or know someone who has ME. But even when you know someone with ME, you don’t really see the truth. Because when you see us, when we’re well enough for you to see us, our illness is largely invisible. You don’t see us when we’re alone at home, or in bed, so it’s easy to misunderstand, it’s easy to forget about us.

A lot of the misunderstanding is also due the damaging name, Chronic Fatigue Syndrome (CFS). If the term CFS didn’t exist, and our illness was only ever referred to as Myalgic Encephalomyelitis (ME), it would change perception immensely. The name CFS has done so much harm. It makes people think we’re just fatigued, just tired. And why would anyone spend their time campaigning for, running marathons for, signing petitions for, writing to MP’s for, raising awareness for… someone who is just tired.

The name CFS has also caused problems, in that, it’s easy to conflate the illness CFS (ME), with the symptom ‘chronic fatigue’. This confusion has had massive repercussions. So far, in the UK, the only government funded research into ME has been for psychological research. The ‘scientists’ involved believe that ME can be cured by ‘lifestyle changes’, Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT). (Please read my previous post on the PACE Trial for more info.) The problem is, the participants of the trials didn’t actually have to have ME (for which the defining/cardinal symptom is Post Exertional Malaise) in order to participate, they only had to have ‘chronic fatigue’. So, the only treatments that the UK, and beyond, have to offer people with ME, are GET and CBT, ‘treatments’ which have only been trialled, not on people with ME, but people with chronic fatigue.

It is, I believe, this false notion of what ME is, that has enabled the unbelievable situation that we are in today. It has held back funding for biomedical research, it is why we have no safe or effective treatment options, no cure, no support from our medical establishments and little respect from the general public.

I can’t blame all the people for not having a thorough understanding of ME, how can any of us know everything about every illness. But, I do blame people, whether friends, family, doctors, scientists, MP’s, journalists, employers, anyone who knows someone with ME, who has a patient with ME, or a constituent with ME, who choose not to inform themselves. The people who choose apathy or blatant disbelief, despite the wealth of knowledge available online, and worse, despite what they are being told by their loved ones. These people are responsible for the decades of neglect and mistreatment that people with ME continue to face. It’s because of these people, that we have to use our precious limited energy on informing, fighting, campaigning and advocacy. These people are the reason that the film, Unrest exists. If Jen had been believed by her doctors from the beginning, she wouldn’t have had to turn her camera on herself. Her doctors only believed her, not on her word, but only once they saw visual evidence. That was the seed that planted this remarkable, and vitally important film.

This quote from the film seems particularly relevant right now…

What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us who are living this. And I remember thinking, there’s no one coming to look for me because no one even knows that I went missing.

We need people to start listening, we need people to start telling the correct story, otherwise, nothing will change.

Sadly, a few days ago, we lost a member of the ME community. She was a wife, a mother, an active member of the ME advocacy community. I’ve shared this Ron Davis quote before, who actually features in the film, “The good news is, these patients don’t die. The bad news is, these patients don’t die.” It’s not, strictly speaking, true. Yes, it’s more common to live with ME for decades, than to die from ME, but that’s not to say ME can’t kill, it can, and it has.

I heard about her death via Jen’s Facebook page, this is what she said…

I am sad but mad as hell. When our community loses someone to this disease, my first thought is always, “someone killed you.” Because someone did. A lot of people.

Think about what Jen is saying here. Today, in 2017, we are no further forward in treating this illness than we were thirty years ago. We, the people with ME, are in the same place today that people with MS were in before the invention of the CAT scan. We have been waiting for far too long for the invention of our ‘CAT scan’ machine.

How can this be, that science is so behind when it comes to ME? It can be, because of the misconceptions that people have about ME. That’s it. It’s that simple. These falsehoods, these misconceptions have held back progress. They have fuelled the lack of investment into biomedical research. While people continue to tell the wrong story about us, while popular opinion (aided by the likes of Comedian Ricky Gervais – see trailer below) continues to believe that we are ‘just tired’, we won’t get anywhere. In order to get adequate funding for research, funding that is in line with other serious conditions, funding that will SAVE LIVES, we need people to tell the correct story. And this, is the reason I do what I do. This is why I write my blog. This is why I publicly share such personal information. This is why I approached my local paper to feature my crowdfunding campaign, not for the donations for my wheelchair, but for the opportunity to raise awareness. This is why I share every article I find about ME on Facebook and Twitter. I cannot just sit back and accept society’s neglect of us. I will continue to fight, I will continue to do everything in my power to make a difference. And after watching this film I am more fired up than ever before.

Something else that came up in the film was the loss of friends, a strange phenomenon that so often runs side by side with chronic illness. Jen said something interesting in a recent Twitter thread, it was about some of the reviews of Unrest, but it got me thinking further about the issue of fading friendships…

About half the film critics reviewing Unrest have said not it’s a “must see” but rather that it’s “a hard watch”. I’m the last person who should be speaking about the quality of my own film. But I can’t help but think what they are saying is “sick and disabled people are hard to watch”. Which is another way of saying – I’d rather look away. What I say at the end of every screening is that Unrest represents for people on this part of the spectrum, the best case scenario. And so while the world says, this is almost too heartbreaking to bear, patients say, you don’t know the half of it. It’s the height of privilege to be able to look away from pain, whoever’s pain it is. And so we are forced to package our pain, meter it, make it acceptable to others in a form that seduces or implores in just the right way. Which is the dance that EVERY oppressed group whether female, black, gay, transgender or disabled has been doing since forever. It is exhausting because there are times all I really want to do is scream.

A few of my friends have drifted out of my life since my diagnosis, and especially since I moved out of Edinburgh. Jen’s quote above made me wonder, do they, like the film critics, find me ‘too hard to watch’? I’ll never know. Because those who have removed themselves from my life have done so without a conversation, an email, a letter, an explanation. Has it been easier for them to walk away, than to face my life as it is now, to see me and my suffering? Is Jen right, is that the height of privilege, to be able to look away from other people’s pain? Have my lost friends made a conscious decision to look away? Were they so accustomed to the friendship that we used to share, that they can’t, or won’t, adapt to this new life of mine/ours? Or maybe they just don’t like me, that would be preferable actually. It’s something that I have been, and will continue to think about for some time.

What Jen said in her Twitter thread also made think about how I present myself. I use my blog to communicate, and to share. It’s my way of talking honestly about my experience of living with this illness, packaged nicely, but without rubbing it in your face. I try not to sugar coat it, but I do end up, sometimes deliberately, sometimes not, doing just that. I protect you from the most harrowing bits, I try not to come across as too negative, I word everything very carefully. Basically, I try to make my existence, my life, more acceptable to you. My blog, while it goes part of the way there, it doesn’t go into the absolute raw reality of my life, no words could, as with every other ME patient, however much I share, you don’t know the half of it.

Now, I knew I wouldn’t get through this film without crying. The first tears I shed while watching it were at this point…

It was like I had died, but was forced to watch as the world moved on. If I completely disappear and I’m in this bed and I can do nothing then it’s like I don’t even exist or that I never existed. And then what was the point of it all? Of being born in the first place? You know and honestly there are a lot of days when I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not – I really don’t want to die. Like I really don’t want to die. But at a certain point it’s hard to call this living and I think the grief of all those things I might not do or see or have or…

That was Jen speaking, but it could be me, I’ve said all of these things. I’m proud of me too. I believe that anyone who can exist through this illness, with the suffering, the stigma, the disbelief, the isolation… are in possession of the most incredible inner-strength. What we live through, for years, decades, lifetimes, most (healthy) people would find unbearable for just one day. We’re positively superhuman. If I get through this alive, I’ll be so goddamn proud of myself. But if I don’t, I won’t blame myself at all. Like they say in the film, suicide is the leading cause of death in people with ME, and that isn’t shocking to me. Like Jen, I don’t want to die, but I do want to not have ME anymore. This is one of the hardest things I have faced while living with ME, the effort of staying alive. Yet, while I do my hardest every day to keep going forward, to remain hopeful, I joined Dignitas (a Swiss non-profit members’ society providing assisted/accompanied suicide). It’s kind of funny, given its purpose, but it’s my Dignitas membership that actually helps me to keep going, knowing that I have that option, one day, if I choose, it’s like my comfort blanket.

Importantly, Unrest also has a focus on those who care for us. The people we couldn’t be without. I don’t feel I’m in a place to comment in much depth, given I’m the patient, and not the carer. But I do know how hard this life can be, the life of caring for someone with ME. And when the carer is a spouse, a sibling, or a parent, etc, it can muddy the relationship a bit. It was lovely to see, despite the odd bit of frustration, i.e. the tent scene, how much Omar values and loves Jen and their marriage. From what they showed us, they don’t seem to have lost what they had before ME joined the relationship.

I think Jen, her husband Omar, and all the film’s ME participants have been extremely brave in making this documentary. I’ve been wondering if I’ll ever be brave enough to turn the camera on myself, I can’t see it happening, but then I also never expected to blog about this stuff, or end up in my local paper.

I would also like to thank Jen, Omar, everyone involved in the making of this film. It’s already making a difference. Here in the UK we desperately need the government and the NHS to start listening. We need funding for biomedical research. We need the NHS to stop prescribing ‘lifestyle changes’ which only harm, rather than help. The biggest ever investment into biomedical research in the UK came from America, the NIH! We need our own government invest in us.

One of the wonderful things that the Unrest team were able to do was arrange a parliamentary screening of Unrest. Forty three MP’s attended. We can only hope now that these MP’s will start fighting for us. Labour MP Mark Tami has already said…

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.

This is exactly the kind of response we need from this film. I want people (the ones who don’t have ME) to have their eyes opened by the brutality/reality of what they’re watching. I want them to be amazed at the resilience of the ME patients featured in the film, against all the odds these people keep smiling and keep hoping. I want this film to educate people. I want it to highlight the dire need for treatment and a cure. I want the people who have previously dismissed ME to admit they’ve been wrong, to put that aside and to keep educating themselves and others. I want our governments and our medical establishments to stop ignoring us. I want this film to push people into action, and if it doesn’t, I don’t know what will.

 

Unrest Official Trailer

 

Jennifer Brea’s TED Talk

 

WATCH UNREST

On the big screen (in Scotland)…

Vue GLASGOW Fort, Monday 27th November, 7pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Odeon EDINBURGH Lothian Road, Wednesday 29th November, 6pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Eastgate Theatre and Arts Centre PEEBLES, Thursday 18th January, 7.30pm. Buy tickets here… https://eastgatearts.com/events/unrest/. (Particularly pleased about this screening in my own town, in the theatre I used to work in! Arranged by myself, my mum and a good friend.)

For other screenings, search here… http://see.unrest.film/showtimes/

Online…

On iTunes… https://itunes.apple.com/gb/movie/unrest/id1265409535?mt=6&ign-mpt=uo%3D4

On Vimeo… https://vimeo.com/ondemand/unrest

On Google Play… https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

On Amazon Video… https://www.amazon.co.uk/Unrest-Jennifer-Brea/dp/B075LS6ZTZ?tag=geo01-21

On VUDU… https://www.vudu.com/movies/#!overview/894864/Unrest

On Netflix… https://www.netflix.com/title/80168300?s=i&trkid=14170032

On DVD…

Unrest is coming to DVD in December. Follow this link and fill out the form to receive a notification when DVDs are on sale… https://www.unrest.film/watch/#DVD

 

UNREST REVIEWS / UNREST IN THE NEWS

ITV News: https://www.youtube.com/watch?v=7UVmIc6FKnE

BBC Breakfast: https://www.youtube.com/watch?v=ZRAM7Q2nx10

The Daily Telegraph: http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/

BBC / Mark Kermode: https://www.youtube.com/watch?v=NGoK56TdNQY&t=2s

The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p

The Pool: https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary

Huffington Posthttp://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

BBC News / Stories http://www.bbc.co.uk/news/stories-41888146

The Daily Express http://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest

The Salt Lake City Tribune http://archive.sltrib.com/article.php?id=4867522&itype=CMSID

The New York Times https://www.nytimes.com/2017/09/21/movies/unrest-review.html?mcubz=0

San Francisco Chronicle http://www.sfchronicle.com/movies/amp/Documenting-a-disease-from-the-inside-12217878.php

Megyn Kelly TODAY https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601

Cosmopolitan http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

Chicago Reader https://www.chicagoreader.com/chicago/unrest/Film?oid=31012439

San Francisco Weekly http://www.sfweekly.com/film/film-film/unrest/

Los Angeles Times http://www.latimes.com/entertainment/movies/la-et-mn-capsule-unrest-review-20170928-story.html

The Hollywood Reporter http://www.hollywoodreporter.com/review/unrest-review-967867

Film Inquiry https://www.filminquiry.com/unrest-2017-review/

The Washington Post https://www.washingtonpost.com/national/health-science/a-film-directed-from-bed-tells-the-story-of-woman-with-chronic-fatigue-syndrome/2017/11/24/05a42594-cec1-11e7-81bc-c55a220c8cbe_story.html?utm_term=.bae816e6532c

Rotten Tomatoes https://www.rottentomatoes.com/m/unrest_2017

Vogue https://www.vogue.com/article/unrest-documentary-netflix-chronic-fatigue-syndrome-wellness