CFS Everyday a Little Death
By Betty Laluna
Never in my life in this great country, the UNITED States of America did I ever think I'd lose faith in my government, the medical system and my fellow man. The disease known as Chronic Fatigue Syndrome in conjunction with the aforementioned have left me at apathy. It's a sad and sorry place to be. As a child I was taught pride in my country, I pledged allegiance and was taught there was a Constitution and a Bill of Rights and that within that was the respect for human rights and an unspoken code which demanded respect and dignity for every citizen regardless of race, gender, creed, and...disability. I see many advocating for many causes, most recently many taking a stand against Bullying. There is a heightened awareness of the LGBT community and I applaud those efforts; however, there are approximately 1 million suffering in this country a slow and debilitating death, a disease of wasting very much like AIDS, and no one is listening. Given the state of our medical system and its dismal failure to diagnose I suspect the number of victims is much higher than that, I do know that this disease affects 17 million globally and that is only the cases that have been diagnosed.
We are suffering and we need help now. We have not only been harmed by our government, specifically the Centers for Disease Control, we have been subjected to psychological harm at the hands of our physicians...we have been subjected to TRAUMA. With abuse comes TRAUMA and to know that you are sick, that you are failing, that you are weak, that you have pain throughout your body, that you can no longer focus the way you once did, to be in some cases bed bound, unable to bathe yourself, go to the bathroom, feed yourself, shop for your own food, much less prepare it, wash your clothes, perform natural normal daily activities of living...to be denied access to specialists that understand this disease unless you have the cash to pay for those who are experts, to find it virtually impossible to find any doctor who understands this disease is more than just chronic sleepies, or malingering, or being lazy...to encounter this type of gas lighting, YES...to have one's reality denied, to have it distorted, to be told by medical professionals that somehow you have a gain in being this sick, to lose dignity to the extent that you defecate your bed, to be denied help by family and friends because the medical establishment dismisses the validity of this illness...to have an entire society ignore and neglect you because science has made no progress...BECAUSE the CDC when they were initially warned right about the time AIDS was making its way into the mainstream willfully neglected the information and instead chose to toss the "MEMO" in the circular file...the only words that come to mind is criminal. It is abuse and it has caused trauma and psychological harm to EVERY victim of this disease, and the harm is exacerbated with every day that goes by...
I don't care WHERE this came from, I never did, I just want my life back, my health back. I lost the opportunity to bond with my own child the way a parent bonds with their child, I wanted my child so badly and during the peak of the best years of his childhood I was confined to a bed, too sick to walk, unable to even take him to the park, the museum...I lost my job, I lost my livelihood, I lost everything to this disease and for me nine years later, I am no further ahead, in fact, I can't even secure an official diagnosis. I know I have CFS...I have EVERY symptom, and I have everything that everyone else has reported they suffered up until the point they took ill, I have viruses in my blood, viruses that are cancer causing and in keeping with all of the other SERIOUS autoimmune diseases, but I am negative for anything that yields a concrete diagnosis of some of the 'respected' and 'empathy' garnering diseases...yes, CFS is a diagnosis of exclusion just like every other autoimmune disease. There is NOTHING to prove the validity of RA, LUPUS, MS, or any of the other autoimmune diseases but they get respect and they get continued research...we get spit upon...we only have each other in our online support forums, holding each other up, day in day out, sharing information, praying for a cure, trying to hold on to a life that has lost its luster and purpose...there is no purpose for living an existence like this and every day that goes by there is less and less hope. I sit here today planning for the day when my child is old enough to stand on his own, not so that we can celebrate a life together but because that is when if I want to die I can choose to do so...rather than be a burden to him, or the system which as of late I am more and more reminded I am useless and a cause for the bad economy. I have no one else to lean on and he has spent his whole life watching me be miserable a prisoner in my own body while the rest of the world resents me for the financial burden I have become.
When we as victims of this horrendous disease speak this way, when we say: "Death would be a welcome relief," the mental health professionals eyes light up...it's almost as if by default all their claims that we are depressed and mentally ill is finally proven. To the mental health profession: YOU SUCK! You suck because I have come across to many victims harmed by you too who have expressed you don't get our illness either! You humor us and so we have to watch what we say and how we say it...and we don't need your anti depressants, we need help overcoming the trauma that your cousins the doctors have inflicted upon us and the dismal conditions the head honchos at the CDC created by their negligencedenying our reality and instead engaging of acampaign of smoke and mirrors labeling this illness psychosomatic when in fact we fit the definition of DISEASED. Many of us die of heart failure and our lifespan is 25 years less than the average person. We die in our sleep, our hearts give out, or we die of CANCER from the viruses that take over our bodies just like AIDS patients do, and I sit here day in and day out rotting...too traumatized at this point to even go to the ER when those chest pains come because once again I'll be checked for track marks just like a junkie, rather than being treated with any dignity or respect, and I'll be humored, not treated but streeted, and very well one day may drop dead on the corner on my way home once again. I've learned to sit here through the chest pains and when I don't drop dead from them I simply have my faith that perhaps the Lord decided it wasn't my time...and all of this could be prevented.
I watch my friends with their loved ones behind a computer screen most days, I am happy for them, they seem not to have a care in the world, and I wish to GOD I had that, but I sit here with my heart, my mind and my emotions, I have a lot to give, but no one wants to be a caretaker, what is there to offer? I have learned to live with the isolation, but can't say I don't resent those who dropped like flies in my darkest moments...writing has become my lifeline and I live for the 'windows' where I can get out...it's like the "EL DOPA" moment in the film Awakenings and I hold on to that in my darkest nights...and I get why they shy away...what else is there for ME to talk about. I wish I had someone who could accompany me on a walk to a park, to a beach anywhere, I want to do things, I just can't and so what I have in my arsenal...my 'social life' consists of spending time on the computer to connect. Television rots my brain.
To some I might look like a liar or attention seeking, as on a good day I can get out and take a walk, not very far, instead I drive...once a month I gear up for my grocery shopping and I buy in bulk because I know with that outing will come a consequence. I have to decide...do I do laundry and order out? Can I afford to? I must ration my social security check, I cannot afford to buy anything that is not absolutely necessary and when my kid gets a cold it becomes a financial crisis...a lost sock is cause for a meltdown, and yet we have by the grace of God survived...but then I see my politicians jockeying for position, pissing on those of us who have no voice, and no energy to fight back...it makes the Bullying campaign seem ironic...hypocritical...a farce, and maybe even more insulting when GOD is attached to the justification.
My medical establishment has decided 'anti depressants' help in some cases, HA! The placebo effect has been proven, so your ploy to prove we really are 'depressed' because your 'meds' help us is all a sham. Hey, if a sugar cube helps someone feel better, I won't argue it, but your own science does not support it, so how can you justify doling out meds when you can't even NAME the cause of our disease? The same disease where at the most recent CFSAC meeting, victims to this disease have reported surviving CANCER, some twice and they share, this disease is more dreaded than CANCER! How could so many people simultaneously elect to make this 'disease' up? Where would the gain be? Worse than CANCER! From people who have survived cancer...WHY would anyone make this up? Dr. Nancy Klimas one of the Nation's top infectious disease experts has said she rather have HIV than Chronic Fatigue...did ANYONE get the Memo? It was in the New York Times! She's on the list of our Nation's leading experts...is anyone listening? Why are you refusing to acknowledge this? What is YOUR gain?
Please do not misunderstand me...I can appreciate the "NOT KNOWING" ALL science is based on hypothesis, but I am speaking out against an intentional campaign to subject a class of people, very sick people to abusive conditions lacking in empathy, compassion, and competent medical care...I can handle a doctor saying: "We don't know yet, but we will try to help you...." What I can't accept is having so many ailments, and a doctor refusing to run tests that will at least provide validation that I am 'worthy' of respect and treatment.
There have been findings of universal 'key' symptoms and conditions that we have...why at minimum are our doctors not trained to run the tests that at minimum can SCREEN potential CFS victims? Why do we have to fight or scurry away in fear of being labeled: Mentally Ill, Aggressive, Uncooperative, Refusing Treatment, suffering from "Anger Issues" the list goes on and on, add anything you like other than "legitimately suffering"...Why isn't this covered in depth, MANDATED continuing education for both physicians and mental health professionals? Recently, it has been shared at the most recent CFSAC hearings in November that the University of Medicine and Dentistry of New Jersey BANNED study and research of CFS on their campus...Why? Why?
We don't tell AIDS patients, Cancer Patients, MS Patients, Diabetics, Lupus Patients, or any other diseased individual they are somatizing and there is no real medical evidence of concrete evidence of the cause of any of the aforementioned and recently, there is even 'buzz' that HIV may not be the cause of AIDS, yet AIDS patients have access to medical treatment, housing, and other resources that assist them with living some quality of life. I must however underscore, the answer is not playing Russian roulette treating us like guinea pigs and recommending just any old drug. Many in desperation are speaking of the praises of Rituximab which is Chemotherapy...Chemo is TOXIC! Some are cheering for Ampligen which also comes with serious side effects and for years has been used as treatment for MS and here we are years later finding out MS is NOT a neurological disease but an autoimmune disease most likely originating in the stomach...but they get the walks and the ribbons, we get a "Go to hell"...and we are in hell, everyday we are in hell but we keep fighting day in and day out and refuse to give up hope...
But today, until I see some promise or hope, I am at apathy and I am at a place where I feel men like Dr. Kevorkian should not have been treated like a criminal, for the mercy killing of someone that had no quality of life. We rally for dogs and cats..."SAVE THEM! SAVE THEM" and we euthanize them when they are suffering...We've got no support, we have no validation, we have no answers, treatment, cure, help, we have nothing and on top of that...we have no choice...it seems barbaric to me...
I hope my country and my fellow man get a clue soon...there is more to humanity than profit and politics...people are suffering...time is not on our side...and if one more person suggests exercise or vitamins, I will wait for a 'good day' choose to order out and kick your butt if I can lift my leg high enough!
SEE: ME/CFS Memorial
*Note...CFS has been used as this article was written in the United States...abroad, it is ME