The 2009 documentary Under Our Skin is an incredibly important movie in the Lyme community. The award winning film is essential viewing for chronic Lyme patients and recommended for family and friends to gain a better understanding of the disease and the challenges of treatment.
After you've watched Under Our Skin, check out the sequel -- Under Our Skin 2: Emergence.
If the first film was enough to make you feel hopeless, the second film will give you a glimmer of hope.
The film focuses on two major themes. One, an update on the political issues surrounding Lyme disease, the CDC, and the IDSA. And, two, an update on the patients from the first film. The former continues to be discouraging and maddening, while the later proves uplifting and hopeful.
You may remember Jordan Fisher Smith, the park ranger from Under Our Skin. He returns in the second film and makes the following statement, which pretty much sums up the Lyme experience: "The greatest problem that I see Lyme people having is that they are set in a public health setting that is doing its best to deny them treatment. You're going to have to fight for yourself, while feeling awful and not feeling like doing anything."
You will see the issues with conflicts of interest within the CDC and the IDSA, which appear to be driven by financial interests.
At one point in the story a scientist with promising research is ordered to shut down his program. Shutting down research? What could be the harm in more knowledge? There are clearly things the CDC doesn't want people to prove, because then they will have to admit they were wrong.
Jordan Fisher Smith hits the nail on the head: "We believe ourselves to be a democratic society, but the facts are we're getting less and less democratic all the time and the wind is blowing more and more in the direction of the big money."
It's horrible to think at the center of all this are very ill people.
Throughout the documentary, we check back in with the patients from the first film 7 years later. Many of the patients are faring better physically following long term treatment; however, we see how this illness tears some families apart and brings other families closer together.
The patients discuss how the healing happens on all levels: physically, emotionally, mentally, and spiritually. Most importantly they are living proof that you can heal.
I loved this moment from Dietrich Klinghardt, MD:
"If you have Lyme disease, by my definition, it means also you belong to a tribe here on the planet that is more conscious and more sensitive and also more likely to do something once you recover that will be of benefit for all of us."
One patient from the first film is now a patient advocate and developed the website Lyme Less Live More to help people with Lyme. Near the end of the film she says, "You can get better and you will get better," to show despite the political issues surrounding Lyme, there are good doctors out there who can help you toward remission.
Unlike the first film this one is a little more difficult to find. You can purchase Under Our Skin 2: Emergence on YouTube, iTunes, or GooglePlay for $3.99. My library (Chicago Public Library) allows you to download it for free on the website Hoopla.
Or you can purchase a copy of the DVD on Amazon:
I'm hoping someday there is and Under Our Skin 3, in which the CDC and IDSA publicly apologize for all the damage done to people with chronic Lyme disease. But until then, we'll keep raising awareness.
"It is reasonable to expect the doctor to recognize that science may not have all the answers to problems of health and healing." - Norman Cousins
When is enough, enough?
Under Our Skin came out in 2009, and aside from small victories, things are very similar in Lyme disease diagnosis and treatment. I'll give you an example from my personal experience. I was in the hospital for a flare up of my chronic co-infection of brucella, which is recognized by conventional doctors, as opposed to chronic Lyme. Now, during this short hospital stay I was seen by an infectious disease doctor who said to me, "Lyme is cured in 28 days, so you don't have that anymore." I was at the top hospital in Illinois and this person is supposed to be an expert in infections yet she had no understanding of one of the most common and fastest growing infections in the country.
It's astounding to me that with so many people are speaking up, including well-known celebrities, no one hears us. This film is a voice for the silent sufferers of Lyme disease.
The film follows a few specific cases of Lyme. The one that stood out to me was a young, vibrant woman, who had severe Bell's palsy and frequent seizures. She was referred to a psychiatrist and told it was all in her head. I don't know how anyone could fake Bell's palsy and seizures. Her desperation was heartbreaking.
There were some moments in the film that I could relate to:
One featured patient travels with U2 on tour. At one point she said, "The hardest thing is everybody thinks I'm normal." On the outside she looked perfectly healthy, but she was walking around in constant pain. I can relate. I look very healthy, no one would ever know I was sick and people who know I'm sick often forget that I have certain limitations.
Another patient recalls a time when a doctor said, "You don't have Lyme Disease." Hearing this struck a nerve with me, because one year before my diagnosis, through Igenex testing and the iSpot test, a doctor said these exact words to me and refused to conduct a simple blood test. I don't know if a conventional ELISA or Western blot would've been positive, but I know in my time as a "undiagnosed" patient I had never been refused any other tests. It makes me wonder why the doctor was so adamant that I didn't have Lyme.
The movie left a bitter taste in my mouth. I've said many times that all I wanted was a diagnosis, not a controversy. But on the other hand the Lyme community is so incredibly supportive. I know we will stick together and find a way to be heard.
There is one point in the movie when a doctor says, "We're going to learn more about chronic illness." This is one way to look at the controversy in a positive light. I think as we solve the mystery of Lyme disease and other chronic infections there will be a breakthrough in conditions previously thought of as incurable, such as certain autoimmune diseases and Alzheimer's disease. In my opinion many of these conditions are caused by chronic bacterial or viral infections and can be treated through antibiotics or, preferably, another safer treatment we have yet to discover.
The movie runs 144 minutes and you can stream it on hulu for free with occasional ads or stream it on Amazon if you have a Prime membership. You can also buy the director's cut on Amazon here:
This is a must see for any Lyme patient and the people who love us.
"You can damage the brain, you can damage the body, but the center of...the person you meet...she was whole." - Karen Cavanagh from OWN's Belief
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.