LIVING WITH AN INVISIBLE DISABILITY
By Mary Rose © November 22nd, 2013
From Winter 2013-2014 Forum
I am a white female, age 53, of French, Native American, Scottish and Irish descent. I have lived with an invisible illness for close to forty years, perhaps even longer. My diagnosis has been erroneously labeled by the US Centers for Disease Control and Prevention (CDC) and their successful efforts to rid US physician’s medical coding system, the ICD-9, of the true name of my illness (more on this momentarily). The World Health Organization (WHO) recognizes this illness in their ICD-10; however our CDC has been trying to convince the WHO to eliminate this diagnostic code from the ICD-10 as well, adding insult to injury.
I’ve been diagnosed with Myalgic Encephalomyelitis (ME), a proven autoimmune disorder; it has also been called Gulf War Syndrome (GWS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and can often be misdiagnosed as Fibromyalgia or Multiple Sclerosis. ME is pandemic, i.e., it has been diagnosed worldwide. Millions of people have been diagnosed and many more people have this illness than the medical system and patients themselves realize due to the feigned ignorance of our CDC and the members of the medical community itself. Some doctors and researchers have been shunned by the medical community for taking an interest in this illness and trying to set the record straight. FMI, read the fascinating and thoroughly well-researched book, Osler’s Web, which took ME suffer and journalist, author Hillary Johnson, nine years to write (rather than the approximately three it would have taken her before the onset of her illness).
The CDC made several political decisions back in the early 1980’s, when AIDS was first becoming a national problem, to put its resources and research into AIDS and to trivialize the very name of the illness I have. They decided to name my illness Chronic Fatigue Syndrome (CFS). This is particularly harmful and misleading since many PWC/MEs (People Living With CFIDS/ME) do not experience fatigue as their primary or most debilitating symptom and certainly not as their only symptom. It’s tantamount to calling Parkinson’s Disease “Chronic Shakiness Syndrome”, as if those with PD only have one symptom to manage and describe their illness. If that’s not bad enough, often medical professionals, members of the media, and others will shorten the name to “Chronic Fatigue,” is even more misleading since many illnesses can cause chronic fatigue, including the severe, debilitating chronic fatigue experienced in cancer patients. In fact, the level of fatigue that patients like me feel with ME compared to that experienced by those who have cancer-related fatigue (CRF) and, if they have immune dysfunctions, is the same. However, as I said, fatigue is not necessarily the primary or most debilitating aspect of ME, although it’s typically far from gentle or kind to us.
The CDC did this calculated, political move of eliminating ME from the ICD-9 so that workers’ compensation claims, employer-paid long term disability insurance, and Social Security Disability Insurance (SSDI) as well as Supplemental Security Insurance (SSI) cannot be claimed by patients diagnosed with ME; in fact, I receive SSDI but due to another diagnosis with which I was additionally diagnosed. The CDC calls this a stress-related syndrome as if we who have it just can’t handle stress. They recommend Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). CBT can, to some degree, assist a PWC/ME only by nature of the fact that it can assist those patients with techniques to support them in coping with the chronic nature of their illness so they don’t fall victim to co-morbid depression, a symptom which accompanies many chronic illnesses. However GET, especially in the form of aerobic exercise, can actually exacerbate ME to the point that a patient will deteriorate and never return to the level at which they currently function.
What is most debilitating about ME in my case is the chronic pain I feel coupled with chronic nausea and peripheral and autonomic neuropathy, which I feel sometimes as a fiery, sometimes charley-horse type pain, but it can also be sharp and stabbing in nature. Insomnia is also oftentimes a difficult intractable, treatment-resistant symptom in PWC/ME with which I live. I also suffer with Irritable Bowel Syndrome (IBS), as part of this illness. In my case, in practical terms, I am troubled by both sudden onset diarrhea but I can also experience constipation. I also experience headaches on a daily basis. At times my pain, nausea and other symptoms become so “over-the-top” that I need to go to the local emergency room for IV pain meds to “reboot” my system so my regular daily meds will work again. My local ER now has a treatment plan for me when I need to do this. I am grateful they do not see me as a “drug-seeker,” as is so often portrayed on mainstream television shows. So far, I’ve been treated with respect and been assisted with IV pain meds and IV anti-nausea meds by ER physicians who see that I’m clearly in severe and uncontrolled pain. One of the ways this convinced them that I’m not “faking it,” is that my typically normal blood pressure rises to an unsafe level because of the pain I’m suffering and returns to normal after IV treatment.
The three top things PWC/MEs die from are cancer, heart disease, and suicide — the latter due to the intractable pain which accompanies this illness. Many of my fellow PWC/MEs develop cancer – typically lymphomas or leukemias — and die from complications from treatment or the disease process itself; also male patients can develop prostate cancer while female patients tend to develop breast cancer.
Unlike the CDC would have us believe, none of my symptoms have anything to do with the fact that I don't care for myself or cannot handle stress. I do and I can. I eat healthy whole foods, mostly local and organic, when my nausea abates. I do simple adaptive yoga and toning for health; toning is a form of breath work that heals and supports various organs and improves overall well-being. I also use therapeutic music on myself since I work part-time as a therapeutic musician; in giving to others in this way, the circle of healing comes back ‘round to me. I also use homeopathy and flower essence therapy, as well as healing touch and energy medicine. In addition, I have a cocktail of prescription medications to manage symptoms and take a nutrient called d-Limonene to all but eliminate my neuropathic pain, which alone can be utterly disabling.
I was finally officially diagnosed by both my Primary Care Provider (PCP) and the John Burns Medical School in Hawaii by the now retired, Dr. Yoshitsugi Hokama, a toxicologist who ironically set the gold standard for other illnesses that the CDC does legitimize and to whom the CDC would go for his authoritative analyses. He found what he discovered and dubbed the ciguatera epitope in my blood stream. This occurred in 2003. Since then, I’ve carried an ICD-9 diagnosis of Chronic Ciguatera Poisoning (FMI: www.ncf-net.org/forum/NCFDisclosureSpring04.htm) which was found, a few years later, to be a biomarker for autoimmune diseases. I also carry a diagnosis of Unspecified Immune Deficiency, Not Otherwise Specified (NOS). Before that, I’d been additionally diagnosed with fibromyalgia, and misdiagnosed with multiple sclerosis, arthritis, IBS, migraines, insomnia, and more. Although I suffer with the symptoms of IBS, chronic headaches, nausea, insomnia, opportunistic infections of various kinds, and chronic, severe pain, as well as joint and muscle issues, my primary illness is ME, whether the CDC wants to legitimize it or not. If I moved to Canada or various other countries that use the accurate medical coding, I would be diagnosed with ME.
Living with an invisible disability is a huge challenge and that’s an understatement. I often hide my pain at my part-time job and in front of family and friends who don’t believe that I’m “really sick.” I won’t use my cane when I need it. I go to work rather than call in sick because my supervisor doesn’t understand the nature of my illness. Some people, including ignorant doctors have told me I just need to “get a life” or that “it’s all in my head.” I wish. I really wish. If it were all in my head, then my therapist of four years who assists those living with chronic illnesses, would have told me so. He is the one person, other than my PCP, who knows the full details of what I live with each day; the two have witnessed me at my worst. I must pace myself but often don’t so I can hide the fact that I’m sick. What this means, in practical terms, is that I have a “flare-up” and may be bedridden for days. I hide that fact also from those I love because I’m embarrassed to admit I’ve disappointed them, yet again, by being unreliable with them. I tell them “something came up at work” and therefore I need to reschedule or I just generally state, “I’m not feeling very well right now and am not going to be able to make it. I’m so sorry to disappoint you.”
People definitely treat me differently than they would if I weren’t sick or even if I was sick but with a visible disability. When they’re of the mind that I’m not truly ill, I simply don’t want to be in their company – that unfortunately has included members of my own family who should, you’d think, know better. However, even people who believe I’m ill will say hurtful things repeatedly. For example, they’ll ask, “What really is your diagnosis?” Oh no. Please not again. I cannot educate others when I’m ill…and try to tell them, “Well, technically, according to our government (the CDC), I have Chronic Fatigue Syndrome (CFS), but, you see, that name tells you nothing about how I’m really sick and, frankly, I’m too damn depleted and disheartened to discuss my true diagnosis, which is Myalgic Encephalomyelitis (ME), including what it is and how it affects me every single day of my life, even though I have an amazingly positive attitude and try to live life to the fullest.” Some people say, “But you look so good, how can you be ill??” and can’t understand why I can’t do all I want to do to make a living or create a life or to support them. I’ve been told by my own mother not to use my cane at family gatherings when I desperately need to so others in my family don’t think I’m sick. WHAT? Or so others don’t get scared. People are afraid they’ll “catch” my illness. It’s not like that. But due to the limits of this essay, I cannot go into why. That’s another chapter. I will say, it is not easy to get this illness, it is an autoimmune disorder, and it is caused by multiple neurotoxins coupled with ionizing radiation exposure, like that in natural gas fracking, nuclear power plants, including Chernobyl, that carried radiation to the USA via winds for months after that catastrophe in the Ukraine in April, 1986. FMI: http://ncf-net.org/radiation.htm.
Now we are faced with another devastating radiological catastrophe at the Fukushima Nuclear Power Plant in Japan that is currently undergoing a “China Syndrome” effect and requires an expert global response to prevent the complete and lasting annihilation of Japan as well as the accompanying need for evacuation of the entire Pacific Coast of North America. FMI: www.popularresistance.org/fukushima-update-tepco-japan-begin-to-face-reality and: www.popularresistance.org/bill-moyers-journal-fighting-the-good-fight.
By the very definition of having an invisible disability, people don’t see my pain, my anguish, my nausea and, oh yes, and my cognitive decline — I used to have a genius IQ — today, not so much. However, my cognition and other symptoms for that matter are helped by some meds and nutrients; generally people who don’t spend a lot of time with me don’t notice my cognitive decline except possibly in my facial expressions if they’re paying attention when, once again, I express the wrong word for another I meant to say or pretend to have a “senior moment” when actually I can’t remember what we had been talking about even minutes and sometimes just seconds before. People also don’t see when I, yet again, get another respiratory or other opportunistic infection because I socially distance myself at home during these times so that I don’t get others sick. If only others would also socially distance themselves when they are sick so I wouldn’t get their infections from which they bounce back within 3-7 days but which can lay me low for three to four weeks at a time.
And yet, with all of this – and I am not alone in this as a PWC/ME – I commit to putting one foot in front of the other each day that I can, to living one day at a time, to self-care, to having a positive attitude, and to learning as much as I can about my illness and the new research that comes out through the National CFIDS Foundation (NCF) in Needham MA and its dedicated, hard-working, all-volunteer staff. FMI: http://ncf-net.org. This dynamic non-profit is not to be confused with the CFIDS Association of America (CAA), which honestly is “in bed” with the CDC and has never funded much research into this illness; in fact they’ve spent $4 million given to them by the CDC to “brand” the name of Chronic Fatigue Syndrome (yes, this is me shaking my head).
Other agencies are providing funding for research that has already been proven and published in peer-reviewed journals and shared by the NCF five, ten, twenty and more years ago; all these agencies accomplish by doing so is raise and dash patients’ hopes, waste time and money that could be spent more wisely on newer research, and duplicate the efforts of the more on-target and cutting edge NCF. The NCF is a true non-profit; its all volunteer staff, many of whom live with ME themselves yet persevere for the good of the world’s patient population, give nearly 100% of their donations to research teams the world over so that perhaps one day, none too soon, we will have a therapy or combination of therapies, if not a cure, that will give at least some PWC/ME patients a wee bit of their lives back. I pray I’m still around at that time to thank the NCF and all the research teams.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606