This is a repost of a very powerful essay written by Jen R back in 2000. But I thought it was so incredibly powerful and just so perfectly describes what we go through that I wanted to repost it here. She really gets into what we go through as patients in a world that doesn't understand us.
Invisible Illnesses, Visible Stereotypes
By Jen R., Fall, 2000
If I had lived during the 19th century and was born into an upper middle class family, I would most likely have been diagnosed as suffering from "hysteria", prescribed the "rest cure", and sent to bed indefinitely. Women who expressed themselves too loudly and too much, who wanted to pursue careers in writing and the arts, who expressed anger and other emotions and behavior that supposedly belonged only to men, were frequently diagnosed as hysterics. Hysterical women were often women who, as we now know, were really clinically depressed, or suffering, like Charlotte Perkins Gilman, who described her bout with the rest cure in the, "The Yellow Wallpaper", from Post Partum depression.
Hysterical women were also women who were survivors of incest, as Freud, the great promoter of the hysteria theory himself declared, then later recanted after public pressure denouncing this finding. And, finally, hysterical women were women who suffered from illnesses that we can now guess, were probably some of the illnesses women suffer from today that are still not widely understood, and therefore frequently questioned. These illnesses are called invisible, as they are widely believed to be impossible to diagnose using standard laboratory tests, but the stereotypes against these illnesses are quite visible.
The illnesses I suffer from that fit into this category are one called Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome in the United States (CFS or CFIDS), but called Myalgic Encephalomyelitis (M.E.) in the rest of the world, and a related illness called Fibromyalgia Syndrome (FMS) accompanied by Myofascial Pain (MPS), and still another disorder called Dysautonomia (a problem that takes many forms with various names). None of these illnesses is well understood.
One example of that fact is that they might not be different illnesses at all, but just different names for parts of the same thing. None of these illnesses is well understood by the huge majority of medical professionals, and, indeed, like most invisible illnesses, and like the hysteria that came before them, they are not taken seriously. They are written off often as psychosomatic complaints, which is another way of calling them psychiatric problems that are not really physical at all - another way of calling them hysteria. They are historically very hard to diagnose, very hard to find treatment for, and far behind where they should be in the field of scientific research, given all the people who have these illnesses and are often debilitated by them.
The majority of the people with these illnesses are women. In the case of Fibromyalgia, the U.S. National Institutes of Health says that 90% of those who have it are women. There are about 9 million people, in the United States alone, diagnosed with FMS. That is a large number of suffering, sick women in severe, chronic pain to be writing off as simply suffering from a mild malady that may not even really exist at all. The National Institutes of Health and the Centers for Disease Control in the U.S., along with other agencies in other nations, and many, many private researchers have long established that all of these illnesses definitely do exist, and that they are affecting very large numbers of women. You can see for yourself how common these illnesses are by simply viewing some of the hundreds of web sites, email lists, and internet forums where sufferers are desperately searching for the latest medical news in hopes of finding a cure. Hypochondriacs do not go looking for cures to their imagined diseases, just like hysterical women had nothing to gain by being locked into bedrooms all day, everyday for years, or sent off to sanitariums to rot like old potatoes.
Yet, many physicians look at all of the people suffering from these illnesses as being merely hypochondriacs. This is more than insult when you are having your life destroyed by a disease for which there is no cure and no known cause. It is more than an insult to have your vitality, your youth, your job, your college career, your social life, and your future taken away by a disease, and then to be told that that disease, which cripples you on a daily basis, does not really exist and must be All In Your Head (or as people with these illnesses say, as we have heard this message so many times: AIYH). They are not AIYH; they are AIYB, all in your body.
Plenty of medical data exists to prove that there are very definite and measurable defects and abnormalities in the bodies of people with CFIDS and FMS, yet much of these findings are not known by most doctors. The few doctors who are actually studying these illnesses take them quite seriously, as the findings are actually often very shocking and disturbing. Yet, I have yet to meet a person without these illnesses or a family member who has them, who knows much at all about them. There are no public service announcements on U.S. television about these illnesses as there are about breast cancer, which, according to some research, affects far fewer women than CFIDS, and there are no movie stars coming out to say that they had these illnesses themselves in order to bring public awareness to them. Cher claims to have been cured; Michelle Akers, the famed soccer player, recently retired due to her health problems, but downplayed the affects CFIDS had on her life throughout her career, in the opinion of some people who have CFIDS themselves and know about her battle with it.
The invisible illnesses, which are mostly in the realm of women's health, are not a top priority in Western medicine in general. There are not too many marches on Washington, as there were by people with AIDS, by people with CFIDS, FMS, or other invisible illnesses, such as Lupus or Gulf War Syndrome. It is impossible for most people with CFIDS to consider marching anywhere, as we can often barely get out of bed. I went to an annual rally in Washington last year with a female friend who also has CFIDS. There was barely anyone there. We had created a poster with three other young women friends with CFIDS, FMS, and Multiple Chemical Sensitivities. We wanted to make our voices heard, and tried. I cannot say that our efforts had any impact at all on anyone other than us. No media people were present. There was no news about the event. And just doing that, that day, made my health worse for quite a while afterwards.
As I sat on the Mall that day, I thought about the millions of dollars that Senators like Bob Dole donated to Viagra research, and I wondered why it is that the U.S. Senate did very little at all to reprimand the Centers for Disease Control for the fact that they admitted to misspending millions of dollars that were designated by Congress for CFIDS research, which set back the search for a solution to this disease by a length of time no one will ever know. I wondered why it was, too, that I hear constantly about the threat of breast cancer, and I never hear about the threats that might not kill you, but can diminish every aspect of your life for the entirety of your life, while you receive more ignorant condescension than care or concern about the fact that you are very ill. These are illnesses like CFIDS, FMS, Lupus, Multiple Sclerosis, Sjogren's Syndrome, and other autoimmune diseases. In other words, these are illnesses that primarily affect women.
I think that last fact is quite relevant.
This is what I want:
I know there will be no cure any time soon. I do not expect a cure in my lifetime. I know, by now, how to lower my expectations. I can live with the fact that I will be sick for the rest of my life. I can live without a cure. But what I want is this: When I walk into an emergency room, I do not want to have to spell out, define, and describe every illness I have and every associated problem for each nurse and doctor I talk to. I do not want to have to explain, again, to yet another doctor and yet another nurse what exactly dysautonomia is and how it affects me and what they need to do about it. I want them to know that I need a saline IV without me having to tell them why I need it. It is salt water, not morphine.
I want them to know that with CFIDS I can have a fever and there might not be a fever when they take my temperature but that does not mean I did not have a fever a couple hours before. I want them to understand that I am telling the truth when I tell them my blood pressure will be normal when they take it, as I am sitting down, but it is never normal after I stand for any length of time. I want them to believe that fact, and not pronounce, after they take my blood pressure, that I am wrong, it is normal, and there is no low blood pressure problem. After I have gone to an emergency room for feeling so faint I feel as though I am dying, I do not want to be told by an ignorant person who knows nothing about my illnesses that my blood pressure is normal.
I want them to know I need a wheelchair when I say I am going to faint, without me having to ask for one, after I say I am about to faint. I want them to know that I might have a normal chest x-ray, but that does not mean I have no trouble breathing. I want them to know that pain, even the most severe physical pain there is, does not necessarily show up on any measurable test, especially not a Complete Blood Count. I want them to know that I do not have gastrointestinal problems because I have poor eating habits, I have gastrointestinal problems because I am sick. I want them to know that nausea, with or without vomiting, does not show up on a blood test, either, but that does not mean it is not present. I want them to know that when you are so nauseated you can barely eat anything for a week, and you end up in an emergency room, then they should probably do something to treat your nausea without you having to request that they do so 35 times for 8 hours.
I want them to know, like they know what AIDS and diabetes are, what Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia are and how they manifest themselves, and that they are serious illnesses.
I want them to understand that a person in her early twenties has nothing to gain by spending time in emergency rooms complaining of illnesses that no one cares about. I want them to know that I do not do that for my personal enjoyment. I want them to know that hypchondriasis is very rare in comparison to the very real illnesses that I have, which happen to have destroyed my entire life. I want them to know that a person requesting saline IV's is not usually a drug addict, especially when she never asks for a pain killer when she is in agony because she does not want to have to explain to them again that no, she is not a drug addict.
I want medical professionals to understand that people who live with chronic pain every single day of their lives are not people who get addicted to pain medications. The nature of addiction happens to involve abuse of something that a person does not actually need. If you are in severe pain every single day of your life, then medication that can ease that pain is not a luxury item. I want medical professionals to understand that if I say I am in agony, I mean it. I want them to understand that pain is not something you can measure by looking at a person, by taking her vital signs, or by ordering tests, sometimes you just have to actually listen to what the patient says and believe her. And I want them to care enough to do something when they have a patient in severe pain other than ignore her.
I want medical professionals to understand the meaning of Quality of Life, which means that the simple fact that you are not dead does not mean that you are not having your life destroyed by a disease. I want people to understand that this matters, that many people would rather be dead than live 80 years with a disease that curtails every aspect of their lives but never kills them and never is treatable and never even shows up in ways obvious enough to make other people believe they are sick.
I want my experiences to be believed because I am not a liar or a hypochondriac or an idiot. I have better things to do with my life than educate myself about illnesses most doctors know nothing about, but when you have your life destroyed by those illnesses, you tend to want to know something about them because you tend to want to get rid of them, or at least have a way of dealing with them. I want people to understand that simple fact. That if a patient happens to know more about a disease than any of the nurses or doctors, it might be because the patient has suffered very detrimental effects from that disease and because she wants to know what is wrong with her because she wants to get better. Knowing about the disease does not mean that you LIKE the disease, and I will never understand, as long as I live, why people make that correlation in their minds so easily.
I want to be believed. I want to get a bit of sympathy, and some actual medical treatment, and I want the people paid to give me that treatment to know a bit about what they are treating me for and what treatment to provide. I do not think that is too much to ask. I do not think that when you have the luxury of having a health insurance policy and living in the United States of America, that it is too much to ask for the nurses and doctors to have heard of your illness before you defined it for them. I think that ought to be done in a classroom before they get their degrees and not in the emergency room.
I want medical professionals to understand that you might be able to have psychosomatic pain, but you cannot fake an abnormality in the shape of your red blood cells, nor can you fake a 40 point drop in your blood pressure when you are standing, nor can you fake brain lesions. And those things occur in people with CFIDS. I want medical professionals to understand that you can be lazy and not want to exercise and you can fake fatigue, but you cannot fake abnormalities in your muscles which occur in CFIDS and Fibromyalgia. I want them to understand that you cannot fake fevers. I want them to understand that very few human beings are lazy enough to want to waste their 20's lying in bed staring at walls.
I want them to understand that very few people enjoy having no social life, no job, and no education, and people who are severely depressed are apathetic, which means that they do not complain about having no social life, no job, and no education because clinical depression means you do not care about those things as opposed to being depressed because of those things, which is a normal reaction to an illness that destroys your life. I want doctors to understand the simple fact that only someone who is severely mentally ill would not complain or be miserable about being too sick to function in their daily lives and that no one has anything to gain by being in that position when they are not even getting an ounce of sympathy for it.
I want doctors to understand that hypochondriacs do not usually want cures for their imagined illnesses and do not usually detest being sick.
I want to be believed. I want my experiences to not be discounted. I want to be able to see a doctor and not be condescended to or patronized. I want to be treated like the sane person disabled by a serious illness that I am.
I want doctors to lose the arrogance that makes them think something they cannot see under a microscope and have never heard much about before automatically does not exist. I want people to have a little knowledge and some memory of the past when many of the illnesses we now know much about were also nonexistent to us because we did not know about them. That did not prevent anyone from getting polio or MS or AIDS.
I do not want to be told again to avoid stress and take some more antidepressants. What I want is to go to Africa and India. I want to teach children in the most poverty stricken corners of the world. I want to do social work; to provide birth control to women who desperately need it. I want to go to one of the colleges I've been admitted to, to get the degree I have always wanted to get, and to work. I want to join the Peace Corps and save whales with Greenpeace and build houses with Habitat for Humanity. I want to open a homeless shelter. I want to volunteer at a soup kitchen. I want to collect 10 stray cats and give them a home. I want to plant a garden of tulips and watermelon.
I want to be able to go to a grocery store and stand in a line without being in danger of fainting and cracking my head open on the linoleum floor. I want to go to a mall at Christmastime, like every other American shmuck, and buy presents, even though I hate malls. I want to have a career and support myself. I want to be able to afford food and a place to live. I want to go for long walks or swim or jog or ride a bike. I want to be able to read books in their entirety. I want to remember half the words I know. I want to remember my phone number at all times. I want to learn statistics and have good penmanship again and paint or draw something. I want to learn to sew and be able to spend hours using my hands and make a quilt.
I want to be able to carry things that weigh ten pounds. I want to be able to sleep at night. I want to be able to wake up feeling like I slept. I want to go two days of my life without taking any medication and feel okay. I want to learn mechanics and change the oil on my car and fix a flat. I want to go hiking, mountain climbing, and bungee jumping. I want to be able to stand in line to buy a ticket for a movie. I want to drive to new places without getting lost. I want my brain and my body back. I want my life. I want to live and be the person I was meant to be and could be without these illnesses. I do not want to ever see another doctor or nurse or emergency room or IV or pharmacy again as long as I live. I do not want to read any medical literature again or think about being sick again as long as I live. I want to write about things that interest me rather than things like this.
I do not want to be sick.
I am not a hypochondriac.
I am not a liar.
And I am not healthy.
I want some recognition of these facts.
Invisible Illnesses, Visible Stereotypes
Blog entry posted by Carrigon, Dec 11, 2011.