Why Is Chronic Illness Ignored?

Autoimmune conditions are on the rise, but medicine lags behind

Photo by Dan Farrell on Unsplash

I have been thinking a lot about chronic illness—about living with pain. Especially in light of Long Covid, now seems the time to talk more about it.

Fatigue. Brain fog. Muscle aches. A lingering cough. Dizziness. Sore lymph nodes. Headache. Confusion. Sleep disruption. Anxiety. Do these symptoms sound familiar?

Most people have had some or all of these symptoms. In the present climate of anxiety, disruption, famine, flood, and threat of war, they might almost be the hallmarks of the modern condition. But what if they didn’t go away? What if the fatigue settled on you like a leaden blanket, making even the slightest task seem Herculean? What if the brain fog remained constant, fuzzing out the sharpness of reality, making you forget the most basic things, leaving you stranded in mid-sentence as your thoughts wandered away? It affects your ability to work, your ability to play, even your ability to rest.

Now imagine that when you sought help, you were told nothing was “really” the matter with you. Diagnostic tests come back inconclusive, and you are told, in some cases quite directly, that it’s all “in your head.”

Buck up. Quit whining. Exercise more. Stop being depressed. The language provided to those suffering from undiagnosed conditions — illness at the edge of medical knowledge — puts the pressure, and even the blame, on the sufferer. You are sick, and you don’t know why. The doctors can’t help you, which is bad enough. But neither do they recognize you. Your disorder, falling outside the certainty of modern medicine, simply does not exist.

I know this. I have chronic illness and chronic pain. I have several disorders. Or none of them, depending on who you ask. I am fine—and I am not. I suffer from IBS; I also have a connective tissue disorder that means I dislocate hips and shoulders with some regularity. I have constant back pain. IBS isn’t taken terribly seriously by medicine, and as to my other problems, well, I don’t qualify for the current disease categories. As my kin would put it, I ain’t broke but I ain’t fixed. Meanwhile, I do constant physical therapy so that I’m able to do fun things. Like walking. But I digress.

We should define our terms. Just what is a chronic, autoimmune illness, and how and why are some of them ignored? Chronic just means ongoing, continual — there is no convenient start and stop, illness and cure. Lou Gehrig’s disease (ALS), Alzheimer’s disease, arthritis, asthma, Crohn’s disease, ulcerative colitis, other inflammatory bowel diseases, and even cystic fibrosis are considered chronic conditions. They have treatments, but generally not a cure, and some of them — such as Crohn’s, IBS, and even early Alzheimer’s, don’t really have exact diagnostics. Unlike diabetes, there isn’t a test to measure if you have IBS, or how badly. Patient experience and symptom lists are the principal measures, and this is where we begin to have trouble.

When diagnostics don’t align, patients are ignored — especially women and ethnic or economic minorities. In one study, women in pain were shown to be more likely to receive prescriptions for sedatives, rather than pain medication (as if the problem were in the head, not the body). The same skew appears when Black patients seek treatment, and this is for known conditions. When a patient faces currently debated (and even contested) illnesses like chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia, Lyme disease — and now long-Covid-19 — their testimony is constantly under suspicion.

In 2015, the U.S. Institute of Medicine declared chronic fatigue syndrome (CFS) to be a verifiable diagnosis with its own set of diagnostic criteria. But this assurance did not stop the debates about whether and who might have it. Skeptics complain that fatigue is too common a symptom, and that in the absence of clinical evidence, it should be treated as a psychological disturbance. Some have likened it to depression, which has drawn serious battle lines between patients and physicians, physicians and scientists, and scientists and one another.

But at the heart of the debates are patients like James Strazza, who cannot leave his bed because the slightest stimuli cause him extraordinary pain. “It has taken everything from me, everything I love to do, every passion, pleasure, all the little things we take for granted every day,” he said. He contracted Epstein–Barr virus in 2008, and the virus triggered aches and fatigue that never went away. Strazza’s own immune system had turned on itself, and in fact, from CFS to IBS, most chronic illnesses are also autoimmune in nature. The problems begin slowly; the symptoms come and go, they morph and change. The doctors told Strazza to “get more exercise.”

The story repeats again and again; a school teacher misdiagnosed for 12 years because doctors didn’t understand the consequence of Lyme disease; a 24-year-old woman told to lose weight when she in fact had ovarian cancer; an older woman suffering for 15 years with untreated and ignored lupus. Modern medicine is good at many things, but it eschews — even fears — uncertainty. Faced with the dreadful admission of knowing nothing, physicians’ own training creates a bias toward certainty, diagnostics, the familiarity of acute, easy-to-identify, treatable illness. The problem is that our health, and our complex immune systems, depends on grappling with the hinterlands just beyond current understanding.

Approximately 45% (or 133 million) of all Americans now suffer from at least one chronic disease — and according to empirical studies, the numbers are on the rise. Now, the Covid-19 pandemic threatens to launch an avalanche of new autoimmune and chronic conditions, and our medical systems are ill equipped and underprepared.

We cannot change the systems overnight. Strazza’s parents have worked to bring attention to his condition in hopes it might be taught in medical schools, and increasing awareness has put Lyme, CFS, and other conditions on the radar. But for the individual patient, dealing with the doubt and frisson of a body out of order, there are other means of help to hand. Patient advocacy groups, which sprang to life on the internet over chronic fatigue, offer points of connection. A flood of memoirs and other works (including an upcoming book by Meghan O’Rourke, The Invisible Kingdom) speak into the silence of suffering. Support groups and counseling are invaluable, too, not because the illness is in your head (it isn’t), but because the burden placed upon the sick creates its own oppressive feelings of anxiety, stress, and doubt.

The invisibility of our conditions and the constant pressure to self-govern, self-improve and — failing that — self-erase, can make us doubt ourselves. But you are not “just tired” when you have chronic fatigue. You are not “bad at nutrition” when you have irritable bowel syndrome. You are not “lazy” because, months after getting Covid-19, you are still struggling to shake the mists from your brain. Your testimony is valid, your voice is important, and you deserve to be heard, cared for, acknowledged, and supported.

Chronic illness is real. And we ignore it at our peril.