Netflix DIAGNOSIS Review By A Lupus Sufferer

• Dr. Lisa Sanders, previously known as The “House” series consultant has gone above and beyond to help those suffering from debilitating undiagnosed chronic illness by inviting more strangers worldwide using The NY Times and social media to lend support from doctors to patients who care to help.

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• From the viewpoint of a lupus sufferer and patient advocate, validation of “it’s not in your head” is finally met thanks to this series documenting those as they finally find an answer, some from across the world. However, it highlights dismissive doctors who don’t care to take time to help patients in the USA. 

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• The series shows raw relationships between family members, good and bad. In the end, there is still hope for the chronically ill to find love and support from family and partners.

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(SPOILERS)

Heartbreaking, overwhelming, disappointing, proud, and yet there was a light among the darkness. A whirlwind of good and bad emotions was heavily intertwined as I watched the Netflix series, DIAGNOSIS from the New York Times.

Not only will it teach you a bit about rare diseases and what to look out for, but it also gives you the opportunity to guess what they may have to given the symptoms described. As a science and healthcare nerd, I enjoyed having to think deeper on what could be causing a myriad of random symptoms and I was proud when I was close and also happy to learn more when I clearly had no idea.

There’s a lot going on that this show sheds some light on. They weren’t apprehensive to leave out how distrustful patients feel towards doctors because of their lack of knowledge, drive to help, and non-existent bedside manner.

I liked that they kept that in there, it makes it so much more relatable for us chronically ill survivors. It’s nice when your feelings are validated, isn’t it?

Hey healthcare providers, this is also a learning opportunity for you. Stop treating patients like their worthless, like their feelings don’t matter like everyone is making symptoms up just because you can’t see them or because the routine bloodwork looks “fine”. Fine indicates there is no emergency, not that everything is perfect and your patient who is clearly in distress needs help.

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Anyway, it’s definitely portrayed to show how the US has extensive financial backing in the research industry which makes the viewer feel proud and excited for “cures” in the future.

However, it won’t go anywhere meaningful when patients don’t trust anyone especially the government for valid reasons.

I mean we’re lucky to have advanced technology and we’ve gone so far in terms of care, but many times, our care isn’t suited to diagnose and treat chronic symptoms. The entire bases of the healthcare system in the US is emergency based medicine. The goal is to always treat and manage symptoms with two options, a pill with horrible side effects or surgery to remove organs with crucial jobs so that we can then rely on pills as a substitute.

From this series, it shows there are many factors that play a role in a successful diagnosis and treatment plan and unfortunately, we are severely lacking in a number of these when we shouldn’t. Some of those factors are compassion, listening skills, teamwork between patient and doctor, and adequate education. A possible solution would be to revisit procedures on how to deal with difficult cases that may very well be out of the doctor’s expertise.

Currently, even with a diagnosis, a patient is left with knowing a term, a bag of medication, and a follow-up visit. There is no direction on how to deal with the everyday struggle, how to cope with a diagnosis and how to re-adjust your life so that a patient is set up for success.

This series has sparked a lot of poor realities, a glimpse of hope, and some very attainable, cost-effective solutions that I would love to work together with others to initiate.

The fact that millions of people in the US alone are suffering from debilitating, life-altering chronic diseases where it takes 5+ years for a diagnosis is appalling.

Most of this could be mitigated if doctor’s listened to their patients and if doctors put themselves in sick person shoes and helped like they’re supposed to. Doctor’s don’t help if they’ve prejudged you because of your socioeconomic status, the color of your skin, or if you’re not interesting enough, or your case is just too hard and they can’t bear to look bad or be defeated.

The Hippocratic oath that was taken is clearly ignored by so many and it’s sad and disappointing to hear how many are being let down each day.

My heart and soul was crushed to hear yet again, more stories of women who were ignored, told it was in their head, or to know that doctors gave up too easily on them. Even if it was in their head, it’s still physical symptoms that need to be addressed.

Dismissive doctors need to quit and find a new passion, medicine clearly isn’t one of them.

While a doctor only learns emergency based medicine and their hands may be tied due to a host of uncontrollable issues, I just wanted to jump through the screen and scream, “do your job, research as much as your patients do, and help your patient find someone who may have the knowledge even if it can’t be you.”

The sad reality is that in 5+ years it takes for a diagnosis and a successful treatment plan a mother will lose her job, a father will lose his home, a child is robbed of their childhood, and relationships fail, those around us are silently suffering and become hopeless and grow tired of their life. They start to question their valid feelings, they start to think even more negative and it’s not right!

Heartbreaking Stories

It was completely heartbreaking to see parents cry for their children. Feeling helpless in protecting them, feeling like no one cared about them or wanted to help them get answers.

As I watched this innocent girl who was so adorable, spunky, and so sad. As she strummed the guitar (episode 2) she sang how she wanted to play sports, how she wanted to go to school, and just be a kid. I cried like a baby for her! Her parents are so strong and try so hard to give her a good life.

The New York Times and Netflix did a really good job getting all the feels out there.

It was heartbreaking to see the volatile relationships between young adults and their parents. While it’s hard to see your children go through so much darkness, it doesn’t make it right to project any anger towards them. I saw a loving father with poor coping skills. He loves his daughter more than anything and that was apparent, but you could see his daughter (episode 1) who acted more mature than him.

Multiple times, he made his wife feel guilty because at that time he thought it was hereditary and only from her side.

To anyone who’s been in similar shoes, never feel guilty for uncontrollable circumstances and never let anyone make you feel guilty for things that you can’t control.

Then to make it worse, a touchy subject of bearing children was discussed. The entire conversation was about how he deserves grandkids.

His daughter was so mature and took it so well meanwhile, she stood up for herself and made a decision to not have children so they don’t suffer like her. It’s such a selfless decision and a hard one.

Then you get to the next episode.

It was so sad to see others in our community failed by our government yet again. The man in episode 3 gave his all during the Gulf War and as quoted from Dr. Sanders, “1/3 of men suffer from gulf war syndrome” because they trusted their government wouldn’t lead them into a chemical landfill. To hear how poorly our vets are treated by the VA, yet again, is disheartening.
To hear that military folks commit suicide because of thoughts like, “…If their government won’t help them at the VA, who will?” Who else will help if the biggest industry that boasts itself on brotherhood won’t?

If you feel helpless because someone or multiple people have failed you, like the marine in episode 3 said, “don’t give up”. There are others who will help you. Take the first step and seek help until someone answers and until you’re comfortable with them.

Overwhelming Relatability

If you have a chronic disease, watching this is overwhelming because, like me, I’ve experienced all of these interactions. I’ve experienced dismissive doctors, GI doctors who laughed when I mentioned celiacs or ER doctors when I mentioned lupus, rude nurses who judged me as I cried in excruciating pain and just want relief during an adenomyosis flare.

I’ve been there, “it was all in my head” too. Clearly 8 autoimmune diseases later, it wasn’t.

Even more, it’s overwhelming to know that we will continually face this even after a diagnosis. To know that our healthcare providers will not work with us as a team if they feel threatened by their patients’ ability to learn in school or outside of school and know themselves more than anyone. While lupus is mentioned, that’s really about it. It’s only mentioned to give the viewer an idea of what the doctors have already tested for, resulting in an even more difficult case. I’m happy lupus was mentioned at least.

Disappointing Healthcare System

Doctors are so full of themselves and so ready to push back when talking with patients. If patients question them they use emotion before logic.

Put the ego down and work to solve the problem. They are not always right as we learn in every single episode(it’s okay doctors, you don’t have to be right, but don’t be dismissive and degrading).

It’s disgusting actually.

Doctors, please don’t give up on your patient and don’t leave them hanging because they’re too complicated.

It’s like a child and a parent with poor parenting skills. A doctor’s duty is to work with their patient, to listen, to observe, and to use their education to help them find a diagnosis.

At the end of the day, the patient still has the decision to make the final choice in their care and at that point, there is nothing a doctor can do and they’ve done their job.

As with parenting, you hope you’ve taught your child everything and equipped them to thrive in this non-forgiving world so that they make good choices.

I’m disappointed in some of the parenting and no parent is perfect and that’s okay. However, they show you some raw emotions and reactions.

In episode 5, one was portrayed as an immature child with a protective mother that I actually was happy to see at first, but then over time, you see that she’s actually overbearing and this hurts her 16-year-old daughter in the long run. When the sister tries to speak up for this teen’s best interest to talk to others, to learn more, she immediately got shut down. Basically, the teen had uncontrollable vomiting which eventually leads to a port that is more invasive and could cost the daughters life as compared to the recommended treatment of something that resembles occupational therapy but at a treatment center.

While mama bear did her duty to protect her baby and while I believe she is right about parasites being the initial cause, it’s okay to be half wrong and accept a treatment that was non-invasive while treating parasites through an integrative approach.

On that topic of mother’s intuition, I’m disappointed in the lack of knowledge that most of us receive about our health and nutrition. The current standards are so out of date that our food pyramid guidelines do more harm than good. The chemicals in our hair products, our food, our water, and so forth are triggering so many reactions that our body is overwhelmed with toxins it can’t get rid of. Epigenetics is eye-opening and a basic level of understanding of this could really help us as a community become forward thinkers in terms of care and prevention.

I think if we had better education, easy access to education, and a drive to learn more, we would be proactive in our lifestyle choices, eliminating the severity of many symptoms of chronic diseases.

Did you remember how the girl in episode 1 was sued multiple times by various doctors because she didn’t pay $300 bill? Are you kidding me?! That is absolutely appalling. I get it, everyone should be paid for their time and I’m sure a ton of people are not paying their bills because they have to choose between eating a meal and utilities, but it’s just sad to see someone so young have to file for bankruptcy, not for poor choices, but because she’s trying to survive.

Proud of Our Community

Each episode you get pissed watching people suffer, seeing them feel defeated, and then you’re happy that a doctor cared. When doctors care, answers are given because the medical team gets wider, more people are contributing to their thoughts. It’s like a think tank for the sick.

I’m proud of the doctors who pushed to find an answer and did what they could to help (who did their job). Seriously though, the fact that I have to praise specific doctors and researchers for doing what they’re supposed to do is what’s wrong with this industry and the series definitely showed each side, a little more patient-centered, finally.

With that said, the credit goes to every wonderful doctor around the world from the hospital in Italy in episode 1 to the researcher in episode 4. Ending with a very special shoutout to Dr. Lisa Sanders who led this entire initiative with The New York Times. They all give me hope in our future with doctors that will lead to patient-centered care, not incentivized-centered care.

She puts the trust back in that I have lost in our health industry. As a sufferer of 8 autoimmune diseases, I’ve lost trust a long time ago which is what lead me to my current passion of re-educating others on their health, their body, and how to live proactive to reduce and prevent symptoms.

The fact that we have to hope we meet a doctor who will care to help relieve pain without debilitating side effects from meds and prevent our diseases from progressing is a harsh reality that I wish we all didn’t have to experience.

A notable moment was when the researcher from episode 4 genuinely felt for the mother and cried promising she’d find a way and do as much as she could for these children who suffer greatly. It was a breath of fresh air.

One thing I’ve noticed is only the doctors who are invested in their patients are ones who experienced similar trauma or have a loved one who has. I wish there didn’t have to be an emotional connection for doctors to do their job correctly.

I think part of the issue is our educational and healthcare system sets doctors up for failure. The stress, the insurance regulations, and the education are lacking in chronic disease since it’s only based on emergency medicine and treating symptoms, not digging for the root cause.

Hopeful for Our Future

There are amazing men out there who love their partners more than anything in this world. Seeing a young man in his 20’s weep because his girlfriend is withering away and is in severe pain, was such a beautiful moment. He cried tears of joy after she received a diagnosis and it was so special to see that he was by her side and supportive.

I’ve felt in the past that no one would ever want to take care of me with all of this baggage and uncertainty on my health and future, but this solidifies more that it’s just not true. Holding myself to a higher standard and knowing my worth has pushed bad people out, and brought good people in. I hope more people watching this find it as eye-opening as an I did and I hope it triggers everyone to think more about what we could do together to help fix our broken system.

One positive thing that social media has done is it has brought us together. Because of social media and strong use of the interwebs, people from around the world connected to help a complete stranger find strength, find peace, and find a diagnosis.

Even if we don’t have an answer,  it’s so much easier to keep going when you know you’re not alone.

An amazing wife in episode 3 was heartwarming. She stood by her man who struggled with uncontrollable emotions, mood swings, and seizures. This is difficult to deal with and to watch your loved one go through this, but love and commitment were apparent and I’m so happy they have each other.

What did you think of this series? Did it make you feel worse or better about healthcare providers?