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When you are diagnosed with a chronic illness, there’s so much stigma that can leave you feeling alone. Jennifer Brea’s Sundance award-winning documentary Unrest is an amazing film in general, but particularly for those with an ME diagnosis.
In this post, you’ll learn what leads to an ME diagnosis, what the symptoms are, and four reasons to watch Unrest.
What Leads to an ME Diagnosis?
ME stands for Myalgic Encephalomyelitis but is often known as Chronic Fatigue Syndrome. It’s a complex disease, and there have not been many studies on ME as of yet. This chronic illness requires careful management of complicated and varying symptoms. ME affects multiple systems in your body, and is typically an ongoing condition that can change over time. According to the World Health Organization, ME is classified as a neurological disease.
There isn’t one single diagnostic test that leads to an ME diagnosis. Unfortunately, since there is so little education or awareness surrounding ME, many patients are often left undiagnosed or are given a misdiagnosis for their symptoms.
What are the Symptoms of ME?
The most common and most significant symptom of ME is called post-exertional malaise. Basically, this means that your symptoms greatly increase and your body isn’t able to function as well after even small amounts of cognitive or physical activity.
Here are some of the other common symptoms of ME:
- Experiencing symptoms when standing that are relieved when sitting or lying down (Orthostatic intolerance)
- Poor sleep quality
- Muscle or joint pain
- Headaches
- Cognitive symptoms like confusion, poor memory, disorientation, and challenges with words when speaking
- Light, sound, vibration, taste, odor, or touch sensitivities
- Digestive symptoms like nausea and abdominal pain
- Poor coordination, muscle fatigue and weakness, and ataxia (a nervous system condition)
- Immune symptoms like lymph node soreness, recurring sore throats, fevers, or flu-like symptoms, along with new food or chemical sensitivities
- Not being able to regulate body temperature
Clearly, the diverse symptoms make actually receiving an ME diagnosis a challenge. Beyond the diagnosis, coping with ME can be isolating and complex, particularly because it is such an unknown disease.
Related: 5 Strategies for Living with Chronic Fatigue Every Day
What is Unrest About?
Films have the power to connect us and shape our experiences. Particularly in the documentary genre, documentaries can provide relief and connection for isolating conditions by letting viewers know they are not alone. Jennifer Brea’s Sundance award-winning documentary Unrest shares her story. Before we get into all of the reasons you should watch Unrest if you have an ME diagnosis, here’s a brief summary of what the film is about.
Jennifer is 28 years old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. Doctors tell her that her condition is “all in her head,” so Jennifer chooses to record her journey into a disease that medicine tends to overlook.
Jennifer is often confined by her illness to her bed, so she connects with others around the globe using Skype. She takes viewers into a forgotten community, crafting intimate portraits of four other families suffering similarly from ME. Jennifer Brea’s wonderfully honest and humane portrayal asks us to rethink the stigma around an illness that affects millions.
Unrest is a vulnerable and eloquent personal documentary that shares the realities of living with ME, and moreover, of living with a diagnosis that medicine tends to stigmatize and overlook. For more information on the documentary, visit the film’s website.
Four Reasons to Watch Unrest
Patient Advocacy Can Spark Change
Patient advocacy has become a powerful tool for sparking change, especially in recent years. Patients can research illnesses on their own, publish blogs and videos to be viewed globally, shoot films, lobby for change, and form movements to raise awareness.
As advocates share their stories, they carve out a space for empathy and shed light on the realities of conditions that most people cannot (or do not) understand. Brea’s Unrest conveys the severity of pain, disability, and social stigma surrounding ME in a vivid and impactful way.
Beyond impacting the medical community, her documentary lets society as a whole view the vulnerable and raw footage of what a disease so often ignored by medicine can do to an otherwise healthy person.
Eases the Isolating Symptoms of ME
Having any chronic illness can be incredibly isolating. Having a disease like ME, which is widely unrecognized or misunderstood in the medical community, is much worse. For individuals, and especially women, around the globe, ME is a debilitating and complex condition. Since doctors tend not to understand or acknowledge ME, patients feel like they are going through the process alone.
Beyond seeing parts of your own ME story reflected on screen, which creates a sense of community, Unrest shows how connected individuals with ME can be through technology as Brea conducts interviews over Skype.
Gives Voice to Patients Around the World
Unrest doesn’t just tell the story of one woman facing an ME diagnosis. Instead, Brea chooses to share the stories and footage of other people struggling with this disease.
On a global level, Brea’s ability to give voice to those suffering from ME is refreshing and creates a sense of the scope of this disease.
Sheds Light on Chronic Illness on an Intimate Level
Brea’s story is highly centered on her own story and journey. She gives viewers an intimate glimpse into what it’s like to live with a chronic illness like ME.
Particularly, the film showcases what happens within a relationship when one person becomes a caregiver. Unrest is packed with emotion crafted through home footage, which helps the documentary to become more about Brea and her husband’s resilience and bond.
Since the film captures the unconditional and ongoing love in her life, Unrest creates hope, even as it acknowledges that without medical research and progress, there isn’t an end visible for dealing with ME.
Medical research and education surrounding an ME diagnosis is necessary, and documentary films like Unrest help spread awareness of the disease and its impacts.
By allowing viewers to have a real, vulnerable glimpse into the journey of having a chronic illness, Unrest is an amazing way to fight the isolation of dealing with ME/CFS.
Have you watched this documentary?
