NOTE: In this article, I will be using PERSON FIRST language. Having grown up around not only my brothers, but also in a community where many people have an autism diagnosis, this is the language I have most often been told that the people with autism around me prefer. Please keep in mind that the general/most preferred language when addressing people with autism/autistic people varies from country to country, and even from city to city, so please don’t take offense if I use language that is not what you prefer.Technically, there is no collective right or wrong option between person-first language and identity-first language, it all depends on the personal preference of each individualwho has an autism diagnosis.
Not only am I the oldest of three children and the only female among my siblings, I am also the only child out of three that doesn’t have a diagnosis of autism. Having even one family member who has autism can be challenging, however, I have also found it to be quite rewarding. I love my brothers with all of my heart, and I wouldn’t change them for the world. My oldest-younger brother has mild autism (which used to be defined as Asperger’s, however, Asperger’s is no longer considered a diagnosis in the DSM-5). My youngest-younger brother has moderate autism. I thought I’d take the opportunity to write about my experiences growing up with siblings who have autism. I’ve seen a lot of people online lately focussing on the negative aspects of autism, I thought I’d write an article about some of the ways my brothers have enriched my life.
I can read anywhere, no matter the amount of noise.
One benefit of growing up with two brothers who have autism is that I can concentrate on reading anywhere, no matter what the noise level. For example, I could read a novel in the middle of a bustling train station or a busy airport with no issues. Children with autism are known to experience meltdowns (loss of behaviouralcontrol due to being overwhelmed, which can manifest as yelling, screaming, and crying) quite often, and my brothers weren’t (aren’t) exempt from that. As a result, I’m used to high amounts of noise and can concentrate through it. If you would like to learn more about meltdowns and autism, and why a meltdown is different to a temper tantrum, you can visit this page by the UK National Autistic Society: https://www.autism.org.uk/about/behaviour/meltdowns.aspx
Also, I can sleep through quite a bit of commotion. When I’m in a deep sleep I can sleep through almost everything; storms, mild earthquakes, you name it. Which is lucky, because between painsomnia and chronic fatigue, I need all the sleep I can get.
Hyper-awareness of people I meet.
I think it was last year that I met a friend of a friend for the first time. We shook hands in greeting, and in that span of a few seconds, I began to wonder… I’m not sure what it was, whether he wasn’t maintaining eye contact or if he held himself a certain way, but right away I was thinking “I wonder if he has autism”. After that brief moment, I didn’t think about it again until a few weeks later when my friend brought up that this guy did, in fact, have (very mild) autism. This occurs relatively often for me, and it’s not even a conscious thing. This may seem very weird to anyone who has not spent a lot of time around people with autism; it may even around like I’m being unfair in making these snap judgements. However, if you have a parent. child, sibling, or close relative that you spend a lot of time with that has autism, you may understand. This hyper-awareness, if you will, is helpful because it means I can adjust my behaviour if need be in order to make the person I am communicating with more comfortable. For example, some people who have autism find maintaining eye contact with others very uncomfortable, so if I suspect that is the case with the person I am talking to, I will not attempt to gain eye contact, nor would I feel upset about it.
I find females a lot harder to read than males, though. Even though I’m female myself, most of my knowledge about autism comes from growing up with my brothers. While I have interacted with many people of all different ability levels in my life, I have spent the most time with my brothers. Autism manifests differently in women than it does in men, and I’ve spent most of my time studying the cues of my brothers and have become used to spotting it in males. As a result, I could meet a woman with mild autism, have a long conversation with her, and never know about her diagnosis until (if) she told me. This hyper-awareness is a weird benefit of growing up around people who have autism
I have gained patience and understanding.
Having my family and I receive judgemental looks and reactions has taught me how horrible it can be to experience this kind of behaviour. I have learned not to judge people by their appearances or by their behaviour, at least until I understand the motivations behind saidbehaviour. A child who appears to be having a temper tantrum may actually be experiencing a meltdown due tobeing overwhelmed. A child who is making constant noises/hand gestures or hiding under tables may be stimming (self-soothing, repetitive behaviour) or hiding due to feeling anxious. If you would like to learn more about stimming and autism, you can visit this page by the Child Mind Institute: https://childmind.org/article/autism-and-stimming/
When you are communicating with a child who has autism, you need to have a lot of patience. This is because autism can cause processing disorders, which can result in the child taking longer than expected to answer a question. It can also cause speech issues, such as difficulty pronouncing certain sounds. There are also other things that can impact interaction with a child who has autism, such as them being prone to losing their train of thought or becoming distracted/ going off on tangents. Not only did my brothers help me to widen my communication skills, but they also taught me how to be patient when dealing with their, sometimes disruptive,behaviour.
There were times in my childhood, however, when my brothers pushed my patience levels past breaking point. Since I struggled with chronic pain from a young age, the pain and fatigue sometimes decreased the amount of patience I had towards my brothers. How my parents coped with a cranky, in-pain preteen and two boys with autism I will never know.
My brothers are a blessing
Yes, there have been struggles growing up, but my brothers have taught me so much. They’ve inspired me more then they will ever know. It hurts my heart to know that people like my brothers get treated badly by others as a result of something beyond their control. Autism is becoming more and more widely understood, and I hope that someday Autism isn’t seen as a negative thing, but rather as a merely different thing.
Autism runs in my family (even if I don’t have it), so I’ve come to terms with the fact that if I have biological children, at least one will likely have autism. I’m not worried, however, because if my brothers have taught me anything, it’s that the blessings in life can come in the most obscure fashions.
About The Author
Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.
Knowing
you are not alone as you face the challenges of a chronic illness can make
accepting those challenges a little easier. My brother, Logan Madsen, and I
both have two rare genetic diseases, making life rather interesting.
We are 2 of only 30 people in the world with Miller syndrome. Our second rare disease is primary ciliary dyskinesia, a life threatening lung disease. The odds of both of us getting both diseases is 1 in 10 billion. We also have autism.
Miller Syndrome Presents Opportunities for Self-Love
Miller
syndrome affects how our bones and muscles form, causing us to look different.
It involves most areas of our bodies including our face, ears, hearing, arms,
wrists, hands, legs, ankles, and feet. We were born with a cleft palette, which
is a hole in the roof of the mouth.
Our
arms are short below the elbow, with bent wrists, small hands, and three bent
fingers and a thumb on each hand. Finding winter gloves that will fit us is
quite an undertaking. Our ankles pronate and we have four toes on each foot.
Having
limited shoulder rotation, limited elbow extension, short arms, no wrist
rotation, small hands, bent fingers, and hardly any dexterity beyond a pincher
grasp makes every task more challenging. Tasks like using the cell phone, tying
shoes, writings, cutting food, typing on the computer, and scratching an itch
takes extra time and energy.
Sometimes
we have to be creative. Wall corners, tennis balls, and push pencils are great
for scratching itches and massaging muscles we can’t reach.
Picking
up a glass of water takes a few steps to ensure I don’t drop the glass.
Repeating this many times a day adds up. I have learned a lot of patience,
self-awareness, and self-love from living with Miller syndrome.
Logan
and I are hearing impaired and we wear hearing aids. We tape the aids to our
head with double sided sticky tape because our ears are cup shaped and can’t
hold them. The summer heat produces a unusual fashion accessory when we sweat
and the aid dangles precariously from our ears.
Once
when Logan and I were young, we got in a fight while we were playing near the
plastic kiddie pool that was filled with water. Logan took a swipe at me and
accidentally hooked my dangling aid with his bent fingers, popping it out of my
ear and propelling it directly into the pool. Score? Thankfully, it still
worked once it dried out. Between the two of us, we have had 50 surgeries to
help correct some of the malformations.
Helping Others Find Answers Brings Peace
In
2010, we became the first family in the world to have our entire genome
sequenced. Okay, being first is cool. This is when scientists discovered the
gene mutation for Miller syndrome. If both parents are carry the mutation,
there is a 25 percent chance the child will be affected. Our genome sequencing
also revealed that we had the gene mutation for our lung disease, primary
ciliary dyskinesia.
By
participating in the study, we helped geneticists find answers to questions. We
also helped others, who can now get tested for Miller syndrome. Learning the
cause of Miller syndrome and our lung disease brought us peace to finally know
the answers.
Chronic Illness Encourages Letting Go of Expectations
Primary
ciliary dyskinesia is an impairment in the little hair-like structures called
cilia that help move mucus out of the lungs. With the cilia not working, Logan
and I have a chronic cough and we get lung inflections that cause progressive
damage and require antibiotics.
Lung
therapy treatments help clear the mucus out and prevent infections. We use a
nebulizer to inhale medicines and then apply airway clearance techniques to
cough up the mucus.
As
my lung disease progressed, using the nebulizer twice a day has become
essential. Each lung therapy treatment takes an hour. In order to accept this
imposition in my day, I had to stop resisting and surrender to doing this
self-care. Letting go of old expectations of what my day was supposed to be like
gave me the freedom to feel more joy.
When I noticed I coughed less, had fewer infections, and fewer hospital stays from using the nebulizer, I was grateful. The idea of missing a treatment now feels unthinkable. The silver lining? I get to watch TV during therapy, yay Netflix.
You Are Not Alone
Growing
up with a sibling who looks like you, when no one else does, was indispensable
in the formation of our self identities.
People
would ask Logan and me if we were twins (they meant identical), even though I
looked like a girl, was quite a bit taller, and 3 years older. It just didn’t
compute to them as they had never seen anything like us. Since we looked the
same with our syndrome, sometimes we even dressed the same to affirm our
likeness and mess with people. Good times.
I
was grateful for a sidekick who experienced similar physical challenges, lung
problems, hospital visits, and surgeries. Logan struggled with having a sister
who represented his own differences and did his best to separate from them,
most of the time.
Though
we responded differently to each other, we both knew we were not alone. We
could understand each other’s unique challenges and life paths we were on.
Our
journeys have taken us far. We are both public speakers and I am a writer.
Logan is an amazing fine artist and the star of his award winning documentary, Logan Syndrome, which I will tell you
about later.
Seeing Beyond Difficulties Releases Resistance
Chronic
illness made me curious about what daily life was like for others with
challenges and how they felt. This compelled me to read books and memoirs from a young age. I
graduated college with a B.S. degree in Psychology, though promptly became a
writer after realizing the odds of finding traditional work that fit me had
worse odds then my birth. I was destined to write.
Living
with chronic illness has taught me to see beyond the difficulty that is causing
resistance and negative feelings until I connect with something that makes me
feel centered again.
Appreciating Different Perspectives Grow Joy and Love
Using
poetic prose, I write about the beauty of life’s expressions and their
relationships to me. Seeing different perspectives about the details in life
brings me joy and fills me with love. In turn, I feel connected to life and
find meaning in my challenges with chronic illness, no longer feeling alone.
Everything exists in relationship to something else.
When
you find the relationships and beauty that raise your sense of well being, this
helps ease the struggle of living with chronic illness. Seeing the beauty in
everything increases my gratitude for all that I do have.
When
I am unable to physically reach for an object because of my short arms or reach
a goal because of fatigue and illness, I can use my mind to reach into myself
and learn more about what makes me who I am.
Helping
you see life a little differently is my passion. When I am coughing a lot, I
look out my window and watch the trees dance in the wind like visual music.
Seeing the trees flexibility and groundedness reminds me to do the same and I
release my tension. As the tree surrenders to the wind, I surrender to the moment.
This calms me and I feel more at peace and accepting of what is happening.
Finding Your Passion Builds Meaning
My
brother also found a passion that helps him live with the rare diseases and disabilities
that we share. From the age of 4, Logan loved to draw. He drew all the time and
got so good that he sold drawings to our mom’s customers when she cut their
hair. Drawing made Logan feel good because he felt normal.
When
Logan was in his early 20s and depressed, he began to paint, creating vivid
photo realistic art. As an extraordinary self-taught artist, he paints about
the details of life and his disabilities. His first series called Nature’s in the Details were closeups of
flowers. Painting these made him happy.
After
Logan’s art show in 2006, he decided to paint details about Miller syndrome,
his lung disease, autism, and chronic pain. He titled the series Syndrome Psychology. It was the first
time he addressed his differences publicly, to help increase people’s awareness
and comfort about differences.
His
bold and provocative paintings inspire people and show how we are more alike
than different on the inside. Even though painting causes him severe pain due
to Miller syndrome, he continues. He said, “Painting keeps me alive.”
Award-Winning Documentary About Hope and the Strength of the Human Spirit
Logan
dreamed of communicating his insights and feelings about what it’s like being
him, in a broader medium than just paint. He wanted to connect more with others
and help inspire people to overcome their own challenges.
He
and his friend, Nathan Meier, a filmmaker and artist, produced a documentary
about Logan called Logan’s Syndrome.
The film won Best Feature Documentary at the Carmel Film Festivaland became available worldwide to rent
or purchase on Oct. 2, 2018.
Logan’s Syndrome follows
Logan in his daily challenges and successes with Miller syndrome, primary
ciliary dyskinesia, and autism, as he paints his Syndrome Psychology series to show in a local gallery art exhibit.
Along the way, Logan shares his unique journey with wit and raw honesty — from
our parents divorce and being raised by a single mom, to his search for
romantic love, and his struggle to accept his conditions.
Unconditional Love Inspires Acceptance And Fortitude
Our
mom’s unconditional love and support made it possible for Logan and me to be
successful in our independence and life purpose. She protected and built our
self-esteem, encouraged us to do our best, and was always there for us.
It
only took a day after my birth for my mom to realize I was pretty awesome. The
doctors sentenced me to the ICU immediately after I was born. She thought she
didn’t want to keep me, but then her unconditional love took over when she held
me for the first time and admired me in her arms. We’ve been inseparable ever
since, at least, until she gently kicked me out the nest, er house, when I was
22 and told me it was time for me to be independent.
Logan
moved out as soon as he turned 18, happy to be away from Mom and his pseudo
twin. I watched the dust trail and dabbed my eyes with a tissue. Now he and I
live in separate apartments in the same complex and enjoy each other’s company,
at the distance of once per week.
Use Your Challenges and Lessons Learned to Inspire Others
My
mom didn’t want all that she has learned
from her experiences with Logan and me to disappear with her when she
dies. She wrote a book called Eight Fingers and Eight Toes: Accepting Life’s
Challenges, by Debbie Jorde. It is about her raising us as a single mother and
the life lessons she has learned. Included are her challenges with divorce, an
eating disorder, and poverty. Some of my writings are in the book.
While
my mom was editing her book in 2009, she was diagnosed with multiple sclerosis.
My mom has always been the optimist and taught us how to accept challenges.
With Logan and me by her side, already connoisseurs of chronic illness and
disabilities, it was a little easier for her to accept her new reality.
Sharing Happiness and Acceptance With Others Creates Purpose
The
challenges of Miller Syndrome, primary ciliary dyskinesia, and autism have
motivated our family to share our experiences. We like to help others
understand that while you are overcoming challenges and dealing with chronic
illness, you are not alone and can still find happiness and acceptance during
difficult times.
My mom created a website about overcoming challenges called Debbiejorde.com. Also found there is my blog about my insights and what my challenges have taught me about myself and other people. You can watch Logan’s movie trailer on the website and purchase the film. The documentary is available on Amazon, iTunes, Google Play, Youtube, Microsoft store, Vudu, Xbox, Walmart, and Overdrive.
Heather Madsen writes and speaks on accepting and overcoming challenges, telling her story in a raw, sensory way that shows her unique perspective about beauty, love, and gratitude. Born with two rare, severe physical conditions and autism, She’s passionate about helping others replace suffering with unconditional self-love.
Chronic illness isn’t a topic that seems to heavily feature in television shows and movies. At least, that was what I thought before I started research for this article. It turns out there are shows, movies and documentaries out there featuring chronic illness, and I was keen to see how accurately it was represented in a world of fairy tale endings and happily-ever-afters. I was reassured to find that there are some shows that don’t shy away from the hard-hitting reality of life with chronic illness. This article specifically focuses on Netflix shows and these are my thoughts on the ones I watched, including:
Alexa and Katie
Brain on Fire
Unrest
The Fundamentals of Caring
Kiss and Cry
Degrassi: Next Class
Gaga: Five Foot Two
My Beautiful Broken Brain
Atypical
Be Here Now
Caution: CONTAINS SOME SPOILERS
Alexa and Katie
Alexa and Katie is an American teen series following the lives of Alexa, who has been diagnosed with cancer, and her best friend Katie. Season one premiered on Netflix in March 2018 and the show has been renewed for a second season. Given that this was a teen show, set in an American high school, I was dubious about what the show could offer someone in their late twenties like myself. However, I did find myself enjoying it.
The humour is questionable at times, but it did have some laugh-out-loud moments and the underlying message was beautiful. It focuses on the struggles of living with illness as a young person and how the support of a friend can be life-changing in that situation. Alexa hides her illness for fear of being treated differently, something which I think all of us can relate to on some level. The show follows her struggle to live a ‘normal’ life whilst also taking care of her health. This is something else I think is very relatable to everyone with a chronic illness.
The show is a clichéd American teen show, but the underlying message is fantastic, and the positivity shown by Alexa is commendable. There are some hard-hitting moments when your heart breaks to watch Alexa miss out on life because of her illness; however, the show is mostly humorous, so it doesn’t dig too deep into the more difficult side of chronic illness. I will be interested to see what happens in season two and much to my own surprise, I will be keeping an eye out for its premiere. If you want something easy to watch which keeps things light hearted, whilst not shying away from some of the difficulties presented by living with a chronic illness as a young person, then give this a go.
Brain on Fire
Of all the shows recommended by Chargies and the Unchargeables team to watch for this article, I was dreading this one the most. I watched the trailer for this film when it first came onto Netflix in June 2018 and decided it would be too close to home, too hard to watch. My husband watched the film while away on holiday earlier in the year and he said it hit very close to home for him and it wouldn’t be easy for me to watch. It was therefore added to my ‘do not watch’ list because I didn’t think I could face it. However, I am so glad I had to watch this as part of my research for this article.
Brain on Fire is based on the true story of Susannah Cahalan, who released her memoir Brain on Fire: My Month of Madness in 2012. The film follows Susannah, an up and coming journalist working in her dream job, living her ‘best life’ in New York. Seemingly from nowhere, Susannah develops an array of symptoms such as voices in her head, seizure, and hypersensitivity to sound. The film follows her story as she desperately tries to find a cause for her symptoms.
The struggle to have doctors take her seriously, let alone obtain an accurate diagnosis, is heartbreakingly relatable for so many of us with chronic illness. Susannah is misdiagnosed, told her symptoms are all in her head, and is written off by almost every medical professional she meets. Her symptoms deteriorate, and her family and boyfriend keep desperately fighting for answers. This film was difficult to watch because it is a reminder that medicine still has a long way to go and too many medical professionals still fail to investigate symptoms when there is no obvious cause for them. It was incredibly emotional to watch Susannah be told it was ‘all in her head’ and become a shell of her former happy, healthy self.
The film also tackles issues such as how difficult chronic illness can be for loved ones and how the support of loved ones can shine a light even in total despair. It also looks at how employers deal with chronic illness, although Susannah was fortunate to have an understanding employer who supported her.
This true story shows that all it takes is one doctor to change a life, even if all others doubt you. This is an issue which I am sure will strike close to home for many people with chronic illness and I advise you have tissues on hand to watch this film. Susannah eventually does find answers when she is diagnosed with a rare autoimmune disease, anti-NMDA Receptor Encephalitis. Finally, she goes on to rebuild her life. She has since been involved in raising awareness of the condition, which was previously misdiagnosed in 90% of cases, according to information shared at the end of the film.
The film highlights the importance of sharing your story, no matter what that story may be. It is also a reminder that even after the diagnosis of a chronic illness, you are still you, just a stronger version of you. The film is hard-hitting. At points I genuinely sobbed, but it is also a story of hope, love and strength which I think anyone with a chronic illness will strongly relate to.
Unrest
Unrest is a documentary following PhD student Jennifer Brea as she battles Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E). Jennifer started documenting her life to cope with her diagnosis and the debilitating symptoms of her illness.
Jennifer fell very ill shortly after getting married and the documentary accurately depicts the struggle of a newly married couple coming to terms with a life-altering diagnosis and all that comes with that. It is extremely relatable to those of us with a chronic illness and tackles the grief, loss and heart break that come with losing your health. It is a stark reminder that life, and health, are extremely fragile and should not be taken for granted.
The documentary discusses the harm of misdiagnosis and the controversial opinion of many medical professionals that M.E/CFS is psychological rather than physical. Jennifer campaigns to bring more awareness to the illness and in doing so speaks with people from all over the globe who are also battling the condition. She does this via Skype and video interviews as she is bed bound for a large portion of time during filming.
The documentary does not shy away from sensitive topics such as suicidal thoughts, whether to have children, and the loss of her quality of life and the future she had hoped for. It also tackles the issue of females being less likely to be believed by medical professionals or not taken seriously due to the hysteria phenomenon. It accurately reflects chronic fatigue and the impact chronic illness has on a marriage or relationship. The documentary also shows the terrifying attitude some countries have towards illnesses that cannot be seen, such as M.E. It features the story of Karina, a young woman removed from her home by authorities in Denmark and effectively held captive for over three years in a psychiatric facility. It also features people living all over the world, which makes it extremely relatable to everyone, regardless of where you live. The documentary is honest, emotional and inspiring, featuring people from all walks of life as they fight to shine a light on an illness seemingly forgotten by medicine.
The Fundamentals of Caring
I had seen this film before and loved it, but I watched it again to refresh before writing this article. I would highly recommend this film. It is emotional, real, quirky and extremely funny.
This American comedy-drama is based on a novel written by Jonathon Evision and premiered on Netflix in June 2016. It features Paul Rudd as a retired writer who is struggling with personal tragedy. He becomes a caregiver and his first job is providing care to a teenage boy who has Duchenne Muscular Dystrophy. The film follows their journey as a friendship blossoms and they both encourage each other to start living life again, rather than watching it pass them by. The teen boy is played by Craig Roberts, who brings a fantastic element of truly British humour into the mix. The film highlights issues such as feeling entitled to good health, wanting to live a normal life, and the feelings of fear and grief chronic illness can evoke. The film reminds us all to not let disability define who you are and never give up on your dreams. It is laugh-out-loud funny, motivational, hard-hitting at times and wonderfully uplifting at others.
Kiss and Cry
This film is based on the true story of Carley Allison, a 17-year-old figure skater and singer, who is diagnosed with an extremely rare type of Sarcoma. It shows how life can change dramatically in a short space of time. According to her own family, who supported the making of the film, it depicts what cancer actually looks like, and not some Hollywood version of cancer.
The style of the film, where at points the actress playing Carley speaks directly to the camera, makes it very personal. It follows Carley’s journey as she comes to terms with her diagnosis and finds the positive even in such a horrific situation. The story also shows how her family, friends and boyfriend supported her, and tackles delicate issues such as friends who struggle to cope and therefore stop contact, pushing people away and wondering why a partner chooses to stay when you are very ill. It also shows Carley trying to protect others from the reality of her illness and faking a smile at times. Furthermore, it examines how relationships with health care professionals can be difficult and reminds us that behind every doctor and nurse is a human being with their own lives, issues and emotions.
Ultimately, Carley’s motto was to ‘always smile’ and the message within the film is beautiful, heartfelt, and very relatable. Carley leaves her mark on the world and reminds us all to do the same, even when life doesn’t go how you planned. The film is very real, down-to-earth and inspiring.
Degrassi: Next Class
This Canadian teen drama made its debut on Netflix in January 2016 and is comprised of four seasons. This was the show that took the most time to watch because all four seasons were available on Netflix and I couldn’t stop once I’d started.
This was another show I wasn’t sure I’d find very relatable because it is a teen drama and therefore focuses on teenage issues, but I was blown away by the range of issues this drama tackled. I genuinely wish teen shows had been this refreshingly honest back in my own teenage days. The show tackles issues such as abuse, drug use, sex, friendship, relationships, homophobia, racism, mental illness, sexuality, and religion.
It also follows the life of character Grace as she comes to terms with a diagnosis of Cystic Fibrosis. Grace hides her diagnosis from her friends in the first season because she doesn’t want pity or to see them struggle to deal with it. In the second episode of season one we see one friend find out the truth and the show does an excellent job of accurately representing how others can struggle to cope with a serious diagnosis. It shows her friend Zoe refusing to believe the illness will eventually kill Grace; Zoe looks for crazy ‘cures’ rather than simply listening to Grace and being there for her. I found this very relatable, and I am sure many people with a chronic illness will too. It is often other people who struggle to come to terms with our diagnosis more than us, and this can hinder our own acceptance of it and the grieving process which is part of all chronic illnesses.
The show does not shy away from the issues of death, life expectancy with the disease, and everything that comes with that. It shows Grace as she moves between acceptance, grief, anger, and hopelessness before finally realising she deserves to live a full life, no matter how short. It also tackles the issue of transplants and the various therapies she must do, as well as how she deals with wearing medical equipment at school once her disease progresses.
The show also follows the character Maya as she struggles with her mental health and suicidal thoughts. It shows how depression and anxiety impact every aspect of her life, the challenges of reaching out for help, the stereotypes and stigma still attached to mental health and ultimately how she tackles those.
Trigger warnings: There are scenes of death and suicide attempts, so please bear this in mind as it may be triggering for some. There are also scenes of a severe car accident, which again may be triggering for some.
Overall, I found the show enjoyable, hard-hitting and unafraid to tackle difficult topics. I pretty much binge-watched this because I got so sucked into the storylines!
Gaga: Five Foot Two
In this 2017 documentary, we are introduced to the world of Lady Gaga. I’ve always enjoyed her music and I was interested to learn more about her, particularly her experience living with Fibromyalgia.
The documentary follows Gaga as she makes her fifth album, Joanne, and the lead up to her half-time performance at the 2017 Super Bowl. It is not solely focused on her battle with Fibromyalgia, but it does feature numerous times in the documentary.
When I first sat down to watch this, I was unsure if I would be able to relate to Lady Gaga in any way. Despite liking her music, we lead completely different lives and I cannot imagine having anything in common with an international superstar. When I started watching the documentary, it seemed to confirm this; I didn’t find Gaga very relatable and if anything found her difficult to watch. However, as the documentary unfolded it was refreshing to see Gaga on a human level: relaxed, no façade and discussing issues which are incredibly difficult to open up about, including mental health, loneliness and chronic pain.
At one point, we see Gaga crying in agony in her apartment due to a flare of her fibro. It is heart-wrenching to watch such a strong woman be crippled by pain, and this is extremely relatable. In that moment, living lives that are different in a million ways becomes insignificant and you can relate to Gaga on such a personal level. You can see the pain written all over her face and body and anyone who suffers with chronic pain knows how she is feeling in that moment. Lady Gaga shows an admirable level of compassion when she acknowledges her privilege to be able to afford a team of people to help her manage her condition and treat her pain.
This documentary highlights that someone can appear totally okay and be functioning as normal, but still be in an incredible amount of pain. Hopefully this documentary is educational for people who do not suffer with chronic pain, as Gaga uses her platform to effectively raise awareness of a still very misunderstood health condition.
My Beautiful Broken Brain
My Beautiful Broken Brain shares the story of Lotje Sodderland, a 34-year-old woman living in London who suffered a Haemorrhagic Stroke as a result of Congenital Vascular Malformation. The documentary follows her journey as she rebuilds her life after her acquired brain injury. As part of her brain injury, she loses her ability to speak, read, and write, among other things, and must learn all those skills again. We witness her journey from the point of her stroke, through inpatient rehabilitation and beyond.
The documentary focuses on her trials and triumphs, the unconditional support of her family and friends, and her fierce determination to recover. It highlights that everything can change in a moment, and accurately chronicles the challenges which surround invisible conditions. It is a raw, emotional, honest account of the every day frustrations of living with a complex health condition. The documentary doesn’t shy away from the realities of Lotje’s life post-stroke and she bravely shares the heartbreaking sense of loss anyone with a chronic illness can relate to.
The documentary was aired on Netflix in March 2016 and shows Lotje going through experimental treatment and the post-stroke complications which follow. It is the story of a woman who must rediscover her identity and learn to live with her ‘new’ brain. It is at times heartbreaking, but it is ultimately an inspiring and hope filled journey which is very relatable to anyone who has had to overcome health challenges and rediscover who they are after a chronic illness diagnosis.
Atypical
Atypical is an American coming-of-age comedy-drama which premiered on Netflix in August 2017. The show focuses on the life of Sam, an 18-year-old with autism, and explores topics such as relationships, sex, friendship and the challenges Sam experiences as he attempts to get a girlfriend and navigate high school.
I can’t speak from experience as to whether this series accurately depicts life with autism. However, I found it insightful and a chance to view the world through different eyes. At the same time, I am aware that the show divided opinion when it premiered and I can understand both sides. It has been said that the show is very stereotypical which was largely unnecessary. I can understand the frustration of this because autism is a spectrum disorder and does not present the same way in everyone. Personal experience with family and friends has introduced me to people at various points on the spectrum and I would be frustrated if someone stereotyped them based on a narrow view of what autism is. However, I felt this show should be included on the list as it is refreshing to see Autism portrayed in the mainstream media and I believe it could help start important conversations about the condition. The other point made by some is that it would be impossible to accurately represent everyone on the spectrum in one character because by its very nature, autism presents differently in every individual it effects.
One of the things I thought was particularly positive about Atypical was it showed Sam in steady employment. I am passionate about ending disability discrimination in the workplace and know it is common place, so it was refreshing to see someone with a disability being positively represented in the work environment. The show also shows how a family unit learns to navigate the ever-changing challenges presented by disability, and how despite the difficulties they often face, Sam and his family have a close, supportive, loving relationship.
On the flip side there were some scenes which troubled me, including some showing how Sam coped with different situations and the behaviour of his mother’s character. I think it is important to remember when watching this show that it represents one person and their experience in a dramatized way.
Overall though I found the show humorous, informative and really exciting because it is fairly unique in that its main character has autism and the whole show is focused around how he views and navigates the world.
Be Here Now
This documentary follows actor Andy Whitfield on his journey to live life to the full with Non-Hodgkin‘s Lymphoma. It made its Netflix debut in 2015 and is a story of unwavering love between Andy, his wife, and their children as they fight to beat his cancer.
The documentary looks at both western medicine and alternative medicine and covers both in some depth. It reminds us that treatment is a personal choice and we must advocate for ourselves. It also explores the psychological impact of cancer and the allows a glimpse into some of the most personal, private moments of their grief.
Andy and his wife are beautiful to watch; their dynamic is remarkable. The documentary highlights the strength of their love, the resilience of their marriage, and their never-ending hope of a happy ending. We see them cling to each other through the storms life brings and navigate each challenge, setback, and triumph in a wholly united way.
It was an emotional watch; you cannot help but be pulled into their world and cry with them. What was truly beautiful about this documentary was how they turned the worst situation imaginable, losing a loved one, into a positive, learning journey. They remind viewers to count every blessing in life, no matter how small, and to always be present in every moment.
About the Author:
Rachel is a 29-year-old Chronic Illness blogger at whatapain.co.uk, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.
Rachel is a 29-year-old Chronic Illness blogger at