When you have an invisible disease such as fibromyalgia, lupus, MS or chronic fatigue, your whole world is disturbed. How you see yourself changes. But how the world sees you does not. His illness is invisible to others, to doctors and to the government. The dangers of not being seen can be life threatening. Almost half of US citizens live with some type of chronic condition. Most do not use a cane or crutch or wheelchair, which would reveal their disability. Ninety-six percent of chronic conditions are invisible.That invisibility presents extraordinary obstacles and risks, depending on who is blind to his illness.
Invisible to the eye
Diseases that are not visible to the naked eye wreak havoc on relationships. Husbands do not believe. Doubts of friends and family. Doctors do not believe and send patients to psychiatrists.Skepticism is not pernicious in itself; Science advances through questions. But human suffering is real, and questioning the integrity of someone who is looking for answers increases the pain.In a recent report on Lyme disease research, Dr. Nevena Zubcevik said at a meeting at the Spaulding Rehabilitation Hospital in Massachusetts that:… many patients who see that they have suffered the physical, mental and emotional effects of the disease for so long, have lost the will to live. “I literally have patients who have just finished,” he said. “They could not continue. The first thing I do is validate their experience and say: “I believe you.” Sometimes they start crying because someone finally heard. Some patients show symptoms of posttraumatic stress disorder because they have been ignored for so long. Marriages dissolve all the time because one spouse thinks the other is lazy. Many chronic patients end up alone.I would say alone and potentially suicidal. And the same could be said of those who suffer from other invisible diseases, such as CFS / MS, fibromyalgia, lupus, MS, Crohn’s disease and others. Just because a disease is not obvious to you does not mean it is not real. To
Invisible to medical exams
Some of the most debilitating conditions are not only invisible to the naked eye, but also invisible to the eyes that look through the microscope. That, too, does not mean that it does not exist. The only meaning is that medical science has not yet discovered it.When people tell me that my illness is in my head, my answer is: “Yes, it is in my head.” My condition is a neurological disorder and the brain is the largest organ of the nervous system. This is in my head. It just isn’t in the part of my head that I can control. ”For centuries, as Susan Sontag rightly pointed out in her book Disease as a Metaphor , diseases have been attributed to the character of the afflicted rather than to the inadequacies of the medical field. Tuberculosis (TB) was considered caused by the internal and repressed passion of an excessive romantic. (1) “As cancer is now believed to be the wage of repression, TB was once explained as the ravages of frustration, ”he wrote in 1978. (2)Nobody thinks today that tuberculosis or cancer are the result of repression or frustration, because science has already discovered the physical cause of each. I dare to say and I hope that in another 40 years, people with Lyme, CFS / ME, fibromyalgia and other similar diseases have been thoroughly investigated so that the afflicted are not blamed for being too tense, too perfectionist, too lazy. Or whatever. It is insulting.
Invisible to the government
But that will not happen without research funding. We have to look deeper, and that costs time and money. Medical research in this country is not appropriate according to the number of people affected. The statistics do not seem to matter at all. Instead, money in medical research seems to go to those with the largest megaphone.Even within cancer research, assignments make no sense. According to the American Cancer Society , as of March 1, 2016, grants awarded for breast cancer research are $ 102 million, while lung cancer is only $ 51 million. This, despite the fact that the Cancer Statistics Center estimates that 158,080 deaths will be caused by lung cancer, while it is estimated that breast cancer will kill 40,890. The whole month of October is dedicated to breast cancer. Have you ever seen a walk for lung cancer? No, because if you have lung cancer, you do not live long or are strong enough to advocate for research.Now imagine: if you have an invisible disease with the naked eye and existing medical tests, how serious the research funding should be. It is bad Very bad. And many invisible diseases frustrate our efforts to advocate for something better because our energies are weakened by our daily existence. We are fighting just to work, no matter marching with megaphones.Nancy Klimas, professor of microbiology and immunology, said in a New York Times interview:Most of my HIV patients are healthy and abundant thanks to three decades of intense and excellent research and billions of dollars invested. Many of my patients with ME / CFS, on the other hand, are terribly ill and cannot work or participate in the care of their families. I divide my clinical time between the two diseases, and I can tell you that if I had to choose between the two diseases (in 2009) I would prefer to have HIV. But the SFC, which affects a million people in the United States alone, has had a small fraction of the research dollars directed at it.In an interview with Al Jazeera, Professor Klimas added that the research on CFS / MS is small, especially when considering the number of sick people and how devastating it is. “I had sought male pattern baldness… $ 18 million for male pattern baldness [but only] $ 3 million for chronic fatigue syndrome, a disease that affects 1 million people in this country who have at least 25 percent of them out of work and disabled. “If I were just a man with baldness, I could heal faster. I’m sorry, but that is simply outrageous and must change. If we don’t see, you have to look. We, each of us, have to look beyond the obvious. Medical researchers should seek deeper and more urgent answers. The government should broaden its vision, see the needs, identify the gaps and allocate research funds more appropriately. We have to be humble and consider that what we cannot see can exist and be true. No one in your right mind opts for this, and by questioning your illness, you are questioning your sanity. When the truth, and as time will tell, ignorance is madness.