When you get an invisible illness like fibromyalgia, or lupus, or MS, or chronic fatigue, your whole world alters. How you see yourself changes. But how the world sees you does not. Your illness is invisible to others, to doctors and to the government. The perils of not being seen can be life-threatening.
Nearly half of U.S. citizens live with some sort 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 your illness.
Invisible To The Eye
Ailments that are not visible to the naked eye wreak havoc in relationships. Spouses do not believe. Friends and family doubt. Doctors do not believe and send patients to psychiatrists.
Skepticism is not in itself pernicious; science advances through questions. But the human suffering is real, and questioning the integrity of someone who is searching for answers magnifies the pain.
In a recent report on Lyme disease research, Dr. Nevena Zubcevik told a gathering at Spaulding Rehabilitation Hospital in Massachusetts that:
... many patients she sees have been suffering the physical, mental, and emotional effects of the disease for so long, they have lost the will to live. “I literally have patients who were just done,” she said. “They couldn’t go on. The first thing I do is validate their experience, and tell them, “I believe you.” Sometimes they start crying because somebody finally listened. Some patients show symptoms of post-traumatic stress disorder because they’ve been ignored for so long. Marriages dissolve all the time because one spouse thinks the other is being lazy. Many chronically ill patients end up alone.
I would say alone and potentially suicidal. And the same could be said for those suffering from other invisible illnesses such as CFS/ME, fibromyalgia, lupus, MS, Crohn’s disease and others. Just because an illness is not obvious to you does not mean it is not real. To think that is ignorant.
Invisible To Medical Tests
Some of the most debilitating conditions are not only invisible to the naked eye, they are also invisible to the eye peering down the microscope. That, too, does not mean it does not exist. The only significance is that medical science has not figured it out yet.
When people have said to me that my illness is all in my head, my riposte is, “Yes it is in my head. My condition is a neurological disorder, and the brain is the largest organ of the nervous system. So it is in my head. It’s just not in the part of my head I can control.”
For centuries, as Susan Sontag aptly pointed out in her book Illness as Metaphor, illnesses have been blamed on the character of the afflicted rather than on the inadequacies of the medical field. Tuberculosis (TB) was deemed to be caused by the inward and suppressed passion of an excessive romantic. (1) “As cancer is now imagined to be the wages of repression, so TB was once explained as the ravages of frustration,” she wrote in 1978. (2)
No one today thinks either TB or cancer is the result of repression or frustration, because science has since figured out the physical cause of each. I daresay and hope that in another 40 years, people with Lyme, CFS/ME, fibromyalgia and other such illnesses will have been researched thoroughly so that those afflicted are not blamed for being too uptight, too perfectionist, too lazy. Or whatever. It is insulting.
Invisible To The Government
But that will not happen without the funding for research. We have to look deeper, and that costs time and money. Medical research in this country is not appropriated according to the number of those affected. Statistics appear not to matter at all. Instead, monies into medical research seem to go to those with the biggest megaphone.
Even within cancer research, the allocations make no sense. According to the American Cancer Society, as of March 1, 2016, grants awarded for breast cancer research is $102 million, while lung cancer is only $51 million. This, despite the fact that the Cancer Statistics Center estimates 158,080 deaths will be caused by lung cancer while breast cancer is estimated to kill 40,890. The entire month of October is devoted to breast cancer. Do you ever see any walks for lung cancer? No, because if you get lung cancer you do not live long or are strong enough to advocate for research.
Now imagine: if you have an invisible illness to the naked eye and to existing medical tests, just how dire funding for research must be. It is bad. Very bad.
And many invisible illnesses thwart our efforts to advocate for better because our energies are sapped by our daily existence. We are struggling just to function, never mind march with megaphones.
Nancy Klimas, a professor of microbiology and immunology, noted in a New York Times interview:
My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
In an interview with Al Jazeera, Prof. Klimas added that research into CFS/ME is small, especially when considering the number of people sick and how devastating it is. “I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability.”
If only I were a man with baldness, I might be cured faster. I am sorry, but that’s just outrageous and must change.
If we do not see, we have to look. We, each of us, have to look beyond the obvious. Medical researchers must look deeper and more urgently for answers. Government needs to broaden its view, see needs, pinpoint gaps and allocate research funds more appropriately.
We have to be humble and consider that what we can not see can still exist and still be true. No one in their right mind choses this, and by questioning their illness you are questioning their sanity. When truthfully, and as time will tell, ignorance is the insanity.
Cassandra Marcella Metzger, JD, MA, RYT is the creator and founder of Wellspring Stones ― the online oasis for those living with illness. After she struggled to find accessible and applicable help on how to live well with illness, she decided to prove that living well while ill wasn’t an oxymoron. She advocates to give voice to the shame and suffering of those who are chronically ill and struggling without help, without resources and without attention. She designed the 21 Day Wellspring Stones Celebration to inspire you to start taking small and strategic steps towards living easier and to mark the official launch of Wellspring Stones on August 16th, 2016. You can join anytime and find out more here. To read my other Huffington Post posts click on my profile above.
(1) Sontag, Susan. Illness as Metaphor and AIDS and Its Metaphors. New York: Picador, 1978, p. 20.
(2) Ibid., 21.