Dear Suffers of the Human Condition,
I want to start by saying this post isn’t about mental illness per se. It’s mostly themed around the personal costs/consequences of ignorance with respect to long term chronic illness… An illness category which happens to include many conditions affecting the brain; like anxiety, schizophrenia and bi-polar; in addition to the body, those conditions like Lupus, Chronic Fatigue Syndrome and Fibromyalgia being examples thereof.
From what I’ve observed the commonality among conditions of the brain and those affecting the body seems to be that these illness are “invisible.” That is to say, no one can really see that you are ill in many cases… unless of course your Lupus is flaring up, your Fibro is crippling you from pain, or you are floridly psychotic.
A sad reality is people living with chronic illness have to spend a lot of time “convincing” others that they are truly suffering, and not simply malingering for want of attention. Since chronic illnesses aren’t something you “wear,” and since the level of discomfort one might experience on a day to day basis can be so variable, people often look at you like you’re an ogre when you try to explain that you’re hindered, for whatever reason, by your illness.
A lot of doctors, even, struggle with the reality that some of these conditions are real conditions with devastating impacts on a person’s life quality. With respect to CFS, some schools of doctors actually believe that CFS is a form of depression that exhibits as a somatic illness, where the state of the “discomforted” mind becomes reflected in the condition of the body.
While I certainly agree that a state of poor mental health, or even the psychological turmoil of stress, can have a huge impact on a person’s sense of bodily health, I think it’s dismissive and disingenuous of doctors to rely on “depression” or somatoform as a catchall for the medically unexplainable. Not only is it dismissive, it might also be poor, unethical even, medical practice.
Outside of the medical realm, I think it’s offensive when someone with a chronic illness has to spend their precious time and energy convincing the people around them that they are not doing very well, and have some needs or some considerations that need to be respected. Why is it that those with chronic illness have to explain to friends and family members, repeatedly; what the nature of their condition is, what it does to the body, how this affects a person, and no, no, chronic illness does not mean that one is terminally lazy and perpetually unmotivated? We understand that cancer is serious, and can be devastating. Why don’t we have the same understanding with chronic illness? Or even a shred of such understanding?
I think I have an answer to these semi-rhetorical questions.
People, for the most part, are uncomfortable with ambiguity. They are uncomfortable in the face of questions with no answers. Allow me to exemplify this by presenting two scenarios of discussion…
Here is a dialogue that one might have while explaining their illness as it relates to cancer:
- Yeah, I got diagnosed with cancer. I’m just so shocked right now. I don’t even know what to think.
- Cancer! Oh, I’m sorry! Do you want to tell me more about it?
- Well, it’s cervical cancer. I had my pap, and they saw abnormal cells. They caught it early, so we’re pretty sure I’ll be okay. But I’m so freaked out.
- Isn’t that the HPV one? Like you can get it if you have the virus?
- Yeah. You get it from a virus. Isn’t that so weird, like a virus, causing cancer?
- Yeah. I hope everything is okay. If you need anything, let me know.
Here is a dialogue that one might have when explaining a condition like CFS:
- Ugh, I’ve been feeling exhausted lately, like I have the flu all the time.
- That’s weird. Are you sick?
- I dunno. I’ve been talking to my doctor, and he’s saying that it might be CFS.
- CFS? What’s that? Like you’re tired all the time?
- Well, sort of, but it’s more than that. You feel like you have the flu. You get all foggy headed, and seem slowed down a bit. There are lots of other symptoms, but those are things that are happening to me right now.
- How do you get CFS.
- They don’t really know. There are a lot of explanations out there right now, but they’re not sure.
- Huh. So do they test you for it? Like to they have a blood test for it?
- Well, not really. The diagnosis is based on the symptoms and ruling out other medical conditions that might explain the symptoms. So I dunno. It’s like you never really know what’s wrong in some ways.
- Yeah, that’s a weird one. I hope you get better.
- Me too.
People living with long term illnesses generally have to learn to become comfortable with ambiguity. And yet, without a clear explanation, with the variable nature of the symptoms, with unfounded alternative explanations that compete for airtime in the media, and with medical professionals who unprofessionally cling to their opinions, rather than evidence or their practice, a person can start to lack confidence in their perception of their health and mental state.
And then a relapse happens, and personal suffering becomes a constant and convincing reminder of the reality of chronic illness. Yes it does exist. No, this is not “in my mind.” This is a condition that is causing me to suffer. It is real, everyone else who wants to weigh in on my experience without living it, be damned.
And so… A few weeks ago, when I read in the Toronto Star, that CFS had been linked to a virus, and linked causally, I was very, very excited. Why? Because plausible explanations for these ambiguous, invisible illnesses are finally surfacing. The people who have been told, “You might be imagining things. It’s all in your head. Here, have an anti-depressant,” will have some vindication. And yes, they deserve it because no one should EVER be told, essentially, to “snap out of it” or “you’re manufacturing your own suffering for attention.”
It was interesting when I told others about my excitement of these research findings. In my excited discussions, I had analogized to my own condition, psychosis, and mentioned that research has been exploring relationships between viruses and psychosis, too. (At present, we don’t know the “why” of psychosis, but we do know the “how.” The how relates to problems with dopamine regulation in the brain. But to this day, no one knows what causes dopamine calibration to go all kablooey in the brain.)
And here was the response (paraphrased), which was a blow to me, but not for the obvious reason:
“Just what we need… Get a bunch of mentally ill people to think that they don’t have mental illness. And of course they’d want it to be a virus, because who wants to be diagnosed with a mental illness.”
So besides the obvious lack of tact in the response, and besides the resounding misconceptions that people with a diagnosis of a condition affecting their mental health are desperate to find an alternative explanation for their symptoms… I thought:
How sad is this.
So YOU think mental illness is just something in the brain. No one knows what the f*ck it really is; people have been exploring explanations just about forever; but you are some kind of armchair expert, fine just thinking it’s “mental illness” in and of itself, and that I’m deluded for being hopeful that an *actual* cause of these conditions exists?
Nice.
How about this alternative reality:
“Mental illness” has a cause, possibly many causes, but we don’t know what the causes are yet, in any comfortably definitive way. There are a lot of careers and a lot of cash invested in finding the causes right now. And really, I’m okay with not knowing what the cause is of my particular medical diagnosis, and I’m very okay taking these pills to treat the symptoms I would have without them.
But… My pills don’t treat any disease that I have. They just deal with the symptoms. I know this. My doctors know this. In fact, we talk about this reality, the lack of a clear cause for my condition and the competing explanations, fairly regularly.
And how about, when they DO find the cause (and they will, one day) I won’t just be taking pills to deal with symptoms. I’ll actually be taking a medicine that is a cure. All of us with dubious, invisible illnesses would be taking a medicine that is a cure, rather than a treatment. Find the cause, and maybe you can cure the illness. Not always, but maybe.
AND what if the thing, whatever it is, that is causing my psychosis symptoms is implicated in other conditions that psychosis makes me statistically prone to; diabetes and heart disease being a few? So what if by finding the “cause” of psychosis, and by “curing” my psychosis, you are also dramatically reducing my chances of developing diabetes or heart disease? You see, it’s not just my “mental illness” that I’m desperate to resolve… There are a host of things that psychosis is associated with, and these things make me and my health vulnerable.
The position that mental illness “just is,” and the mentally ill should “just deal,” is the consequence of a fundamental lack of curiosity. Without curiosity, we settle into the close comfort of ignorance. Telling me, and people living with illnesses like mine, that we’re desperate not to be “mentally ill” is just plain ignorant.
So after all of the writing above, my hopeful summary: Maybe people with chronic illnesses are on a path to vindication, where the cure isn’t “gathering the will,” or “finding motivation,” or “getting a job,” or even “staying on meds,” or “taking better care of yourself;” the cure would be treating the cause of the symptoms.
Imagine that! A brave new world of curative medicine for those with chronic illness! It might be coming!
Hoping to inspire some curiosity,
O.
