Unrest and Me

Credit: Jason Frank Disbelieved by doctors, Jennifer Brea turns the camera on herself to reveal the hidden world of ME in her film, Unrest.

Even though I had glanced at some reviews saying this film is “jaw-dropping”, “intimate” and “powerful”, I don’t think I was ready for what I was about to see.

I lay in my bed, tired from the events of the week, yet wanted to be proactive in my research, so I turned to “Unrest”. Directed by Jennifer Brea, it follows her story of living with M.E (Myalgic Encephalomyelitis) also known as Chronic Fatigue Syndome. These conditions are similar to my own (fibromyalgia) so was intrigued as to her experiences of her condition and what she has found along the way.

She was studying for her PHD when she caught a virus. She recovered, but was never fully well after. Not only did she still suffer with illness but it evolved and got worse. Doctors and specialists were visited, but tests came back clear. “You’re just dehydrated”, “Everybody gets stressed”, they would say. Brea found herself bedridden, often unable to form sentences or even speak, like she had no thoughts or words. Light became painful and the smallest sound could send her body into agony. She would lose control of her body without warning.

It’s like someone turned the lights off or something”

-Jennifer Brea

She took to the internet from her bed, and took it upon herself to look up her illness and found that millions of people all over the world are suffering with the same symptoms; they all had M.E.

Hearing her diagnosis story resonated with my own so vividly. I had a history of depression, so most of my physical symptoms were put down to that. I was convinced at first that I had depression, but kept telling doctors that it was different than the other times I’d suffered with it. Before I had a reason to be depressed; problems at home, relationships etc. This time I had no real course to be depressed, I just was. My symptoms got worse which made me more depressed because I couldn’t do what I wanted to do.

As my pain got worse, I started to realise I had to really insist on the doctors checking my symptoms. When the doctors surgery couldn’t get me an appointment, I’d say “Fine, I’m going to the hospital”, then they’d find an appointment for me to see a doctor that day. I had tests for arthritis, blood tests all came back clear. No pain relief was given. I went back again, they did the same thing, except just checked my bloods to see if I was anemic (which I was slightly), not for inflammation, and left it there.

Meanwhile, my uncle was receiving treatment for Fibromyalgia, and I found similarities in his symptoms to mine. I did some research, looked at what it was and felt that this could be it. So I went back again, told the doctors that I think I have Fibromyalgia, this time referred me to a physiotherapist. It was then that he questioned why nothing had been done sooner, said there was little he could do and referred me to a specialist at hospital as a matter of urgency.

From there, the diagnosis was fairly quick, I had an appointment at the hospital and was there for around 3 hours. I had blood tests done again, urine tests, ultrasounds, physiotherapy, talked through my medical history and was finally told I had Fibromyalgia and would get better in about 12-18 months. I was handed a leaflet, told my GP would be notified and was referred to hydrotherapy and occupational therapy.

One has to be careful. If you say too little, they can’t help you. And if you say too much, they think you’re a kind of mental patient.

-Omar Wascow, Jennifer’s husband

I had spent so much time, years, second guessing myself. I was made to believe that the pain I was experiencing was all in my head and I should just fight through it and carry on as normal. Omar, for me, explained the process of diagnosis so perfectly. That is exactly how I felt. I can remember the looks the doctors would give me, how they would tell me that stress affects us in different ways. I felt as though I was being mocked for experiencing these symptoms.

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Credit: Shella Films Jessica Taylor, bedridden with severe ME since she was 15, has her makeup done by her sister, Ruby, in the film Unrest.

Jennifer started to talk to people from all over the world and film them from her bed. This included a young woman from England who had been bedridden for 8 years and we got to see her feet touch the ground for the first time in years before her body shut down with exhaustion. We also got to see a young woman from Denmark who had been forced from her home and put into hospital against her will for 3 years, as Danish health authorities don’t see M.E as a physical disease but a psychiatric one, and therefore believe that her parents/carers indulging in her symptoms were keeping her sick. We heard the story of a mother from the US, who visited 10-12 different doctors for a diagnosis, all said nothing was there. Even her family started to doubt her, leading to her marital separation. She then had to watch her daughter have the same condition years later. Although I am thankfully not bedridden and have never had to experience isolation from my loved ones, the sense of not being believed is palpable.

Saw someone collecting for M.E, that’s the one where “I don’t feel like going to work today”

-Ricky Gervais

Then something came up that I had never before even considered as part of the problem. If you look at the history of this condition, women have been institutionalised suffering with the same symptoms. It was diagnosed as hysteria. Egyptians believed it was caused by wondering womb. The Greeks thought it was sexual deprivation. Freud said it was repressed memory. It is commonly suggested that autoimmune conditions are caused by trauma, sometimes unknown to the sufferers.

In the 1980s, Dr Nancy Klimas, a Clinical Immunologist, noticed people getting sick without explanation. She saw women being treated with antidepressants and anti psychotics without any history of suffering with these conditions. After immune system tests were conducted, she found that anti viral cells weren’t working efficiently and then began to be able to diagnose these women.

80% of autoimmune syndromes are experienced in women, and Brea questions whether what we are dealing with here is a sexist issue. Are we not being believed because the majority of us are female? I have never considered myself to be a feminist, but looking at how women have been treated in the past, and how very little progress has been made since the 80s, it’s difficult to deny that this could be a major part of the issue with diagnosis and treatment. If they don’t believe the condition exists, then why would they fund something that’s not real?

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Credit: Shella Films Unable to find treatment, Jen tries to understand the science and metabolics of her disease in the film Unrest.

This documentary also begs the question: “When medicine has no answers for me, where do I turn?”. There is no cure for M.E or similar conditions like Fibromyalgia, just pain relief and other forms of medication given to us by our GPs. So much of our recovery progress is through doing our own research, trying out different treatments to help with our symptoms. I have had hydrotherapy, which unfortunately wasn’t for me, but am currently seeing an Occupational Therapist. I have read up on my condition, been to the library and read books on it. I have tried different diets; gluten free, dairy free, sugar free, sweetener free, meat free, wheat free, and sometimes all of them at once with different results. You only have to go on sites like YouTube to see all sorts of so called “cures” for autoimmune conditions.

Brea is pro active in finding a method of relieving her symptoms. She is open to trying some of the “crazier” ones, which we see in this film. This involves eating bone marrow, magnesium injections, hookworms, mold avoidance and moving to a drier climate. Although we can see the benefits she experienced from trying these methods out, they never seemed to last very long before she’d be bed ridden again.

This is one of the many frustrating aspects of having this condition. You can work really hard to finding a method of relief, you think you’ve cracked it. But then you crash again.

Recovery is not linear

I saw this quote on Instagram a few weeks back and it has really resonated with me whilst researching for my project. I keep thinking about how there is no recovery program to follow when receiving a diagnosis. We are forced to be very independent and proactive in our recovery. We have to try something out, learn to be okay when if or when it fails and start again with something different. Recovery truly is not linear. Often, you find yourself going two steps forward three steps back.

©Millions Missing 2016

One of the main things that hit me really hard when watching this documentary is the mental affect this condition has on those suffering and their loved ones. So many things Jennifer said in this film broke me:

I’m doing a good job by just holding it together and not killing myself…I really don’t want to die, but at some point its hard to call this living

-Jennifer Brea

Hearing her say this really got to me, because these are my words too. I have thought the exact same thing about my own life and my illness. The emotional effects of disabling conditions like these is sometimes so overwhelming. She describes it has like she had died but was being forced to watch as the world moved on, and that is exactly what it can be like. Having to watch the fun and know you can’t join in is so incredibly painful. It’s like grieving for yourself, you grieve for all the things you can’t do anymore, the things you wanted to do but can’t now, the things you want to see but won’t be able to. It’s incredibly sad. And when you can’t do anything but lie in bed, it’s hard to not let that get to you.

I can’t be anybody’s Mum like this. I can’t be anybody’s wife like this

-Jennifer Brea

This was something else that really got to me. I often think about what my future holds for me. Do I want to have children? Will I be able to have children? Will I be able to hold down a relationship? Can I put a future partner through what I have to deal with? Watching the stories of these men and women in this documentary reassured some of these answers, but more considerations have to be taken than normal.

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Credit: Shella Films In the film Unrest, Jen and her husband, Omar confront an uncertain future in the face of chronic illness.

Something that really hurts me about illnesses like this is the effect it has on loved ones. Jennifer talks about how she feels she is stopping her husband Omar from doing amazing things. I think about this all the time, I feel guilty for being ill, for being a burden. I want to be more independent but know that it’s not realistic. I couldn’t function without my dads help, and I feel like I’m holding him back from living his life the way he wants to and the way he deserves to. Until I make a vast improvement, it’s hard to see a way out.

Jennifer ends the film with the image of how illness is depicted in films and books. It normally ends as something that can be cured or something that will kill you. Our conditions are neither. It so often feels never ending, but at times when it is difficult to remain positive, it is important to be grateful for everything you do have.

This illness destroyed my life, but what it showed me, I could never give that back

-Jennifer Brea

The physical and mental affects autoimmune syndromes have on sufferers are harrowing, but for me, I have grown up so much more since having it. I think deeper and more openly, I am far less judgmental of others and take pleasure in the small things. I am grateful for everything I get and everyone I have around me. You take less for granted. I hate what the condition has given to me, but I like myself more. It is an odd relationship I have with my illness.

The reviews for this film were not wrong and I am so delighted that this has been made. I would be interested to see what my family and friends would think of this film if they watched it. Would they have any questions for me? What would they be? Unrest has brought up more questions for my research project and has helped answer some of my existing ones. I feel that it is a huge and significant source of research, contemporary and culturally relevant and will continue to follow Jennifer Brea’s campaigning.

References

Millions Missing, (2016). Shoes from the Street Protests [online] Available at: https://meaction.smugmug.com/Millions-Missing/Shoes/i-cWKPKDC (Accessed 3 November 2017)

Rotten Tomatoes, (2017). Unrest [online] Available at: https://www.rottentomatoes.com/m/unrest_2017/ (Accessed 3 November 2017)

Unrest, (2017). Photography and Stills [online] Available at: https://www.unrest.film/photos/ (Accessed 3 November 2017)

Unrest. (2017). Directed by Jennifer Brea. USA: Shella Films

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