For anyone with a chronic illness or anyone who is supporting a loved one with a chronic illness, I HAVE to recommend the following movie which I stumbled upon while watching Netflix tonight. As you well know, we Lymies tend to live on the computer streaming movies or television since some of us are bedridden for years of our lives. Many movies are not a clear representation of what we go through but what I found today hit the nail on the head.
The movie is called Afflicted and it contained the stories of quite a few people who had illnesses ranging from Chronic Lyme Disease to ME (myalgic encephalomyelitis) / CFS (chronic fatigue syndrome), MCS (multiple chemical sensitivities) to Toxic Mold Sensitivities, Epstein-Barr Virus (recurrent and persistent) which was causing severe dystonia and facial tic-like gesticulations, EMS (electromagnetic sensitivity — cannot tolerate ANY electronic frequencies such as cell phones, power lines, WiFi in the house, being in a kitchen near a refrigerator or stove, going to a store with fluorescent lights etc.), extreme chronic pain from head to toe, muscle paresthesias and other invisible illnesses such as CVID (common variable immune deficiency) and severe vitamin and mineral deficiencies which alter cognitive function and memory.
This was a seven part series ranging from 35-47 minutes each section where the characters brought you into their homes, lives, relationships, medication regimens, doctor’s appointments and daily struggles to show you what it was like to live with their diseases. They opened up about their feelings, what they have lost in the way of their dreams and aspirations for their futures and you see how they change over the course of the movie. Some for the better and some for the worse. You get to see how they have to eat a certain way due to chemical sensitivities, bathe in an inflatable pool in a bed because they are bedridden, call ahead to the store to ask for what they want because they have to run in to the customer service desk and run out because the fluorescent lights are hurting them and so many other adjustments that they must make just to function in normal society on a day-to-day basis. These are things that the lay person doesn’t even realize is happening around them all the time, while others are living in this hell 24/7.
As a Chronic Lyme patient myself, I recognized names of doctors that I have studied as I have searched for specialists in the field of Lyme Research. Dr Horowitz and Dr Klinghardt were featured along with many other well known physicians, as well as, certain institutes that are known for being major places of healing that we have all tried to be treated at in the hopes that they may possibly have the “cure” for our pain and suffering such as the Hansa Center and the Sofia Institute. I know that I have often wished that if only I could afford the $8,000-$15,000 out of pocket it would take to be treated at one of those places, I would have made the trip myself!!
The problem is that all of these treatments usually are not covered by insurance. This is discussed in the movie as well. Most of these people have spent their entire savings and one couple has spent well over 2 million dollars in the past 10 years just treating the woman’s illnesses. Not everyone has that kind of cash. One couple struggles financially and the husband depletes his savings, then takes a second job to pay for his wife’s treatments while he goes to live at his parent’s house because his wife is allergic to him! The struggles are real and the financial battle only makes it worse.
Personally, despite starting a Go Fund Me account, a Pay Pal account, being on the news to spread the word about Chronic Lyme Disease and my condition and writing this blog with a donate button on it, I still have spent my entire retirement savings from when I was working and only have my disability income to survive on for the remainder of my life now. I am only 47 years old. It is unlikely that I will ever recover enough to return to work in any capacity. It is the lack of funds that put a stop to my aggressive treatment of my disease.
I am not alone either. Most people are in the same position as me. When the money runs out, you begin to only do what little you can to stay as healthy as possible within your financial means. That’s just the way it is. You fight with “guns-a-blazin” at the beginning but after 6-7 years and when all the money is gone, if you are not better…..it boils down to survival. I need a roof over my head and food in my mouth first, after that I will spend what I can on my disease. The money tree for Lyme has just dried up. It is not a pity thing, it is a reality thing.
It was great to see these people go to these centers and watch their experience first hand so I could get an accurate picture of what transpires there and what their outcomes were. After watching this movie, I feel a lot better about the decisions that I have made about my treatment plan over these past 7 years as I have battled Chronic Lyme. What was nice about this movie is that everyone had a different illness so it can appeal to a whole group of people suffering from invisible illnesses because it encompassed just enough of the similarities we share about being doubted by doctors when we say that we are ill but it also brought us together by showing that we are all facing the same battles.
This movie was also fantastic for caregivers to watch because I saw everything from a mother who was the pure reflection of my own mother, she was at her adult son’s bedside providing for his every need as he battled Chronic Lyme Disease even though he was often emotionally detached from her due to the disease and the love she gave him never waned. He was able to communicate his appreciation in small gestures nonetheless and you see him struggle as he loses everything he has ever worked for in his life. Then you see a marriage fall apart, another one get stronger through the struggles and you also see a father-in-law who if he just took the time to LEARN about the illness he could have probably helped save his son’s marriage and most certainly been a better father to his son as he stood by and stoically watched his son suffer through the heartbreak alone. That father should have been ashamed of himself for the way he treated his son. The caregivers have it hard enough without other family members being unsupportive. It was a real kaleidoscope view into the family dynamic of when someone gets ill with an invisible illness.
There is one couple that goes to incredible lengths in an attempt to keep the woman well in the movie. They get rid of all worldly possessions, strip a van down to simply the metal and drive into the desert to avoid all possibilities of mold spores in any way. They must live a life of complete decontamination and dryness if she is to survive. The man actually defers a full scholarship to Harvard Divinity School to take care of her for a year and then a decision must be made as that year comes to an end or else he will have to forfeit the scholarship. He had given up everything to take her out to the desert to save her life, now what were they going to do? The money was running out, so was the time at Harvard, what did the future hold? Watch the movie….
One woman was fortunate enough to have a hyperbaric oxygen chamber right in her living room that two people could fit in so she would invite over her sick best friend and they would do treatments together. I find that one of the most common complaints among everyone was the isolation of having an invisible chronic illness. Unless you are experiencing it yourself, you simply cannot understand what we are feeling and that is so true. I’m sorry but that is just the way it is.
It doesn’t mean we want you to stop TRYING to understand how we feel or learning about what is happening to our bodies. We need you in our corners as we fight the biggest battle of our lives. It is hard enough when everyone around us looks at us with doubt on their faces and doctors tell us that our symptoms are “just not possible” as we lie there in agony. We need to know that above all…YOU believe us and will fight for us with all of your strength. We are counting on YOU.
Afterall, we are the……Afflicted.