While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy. At least, we appear healthier than we really are.
This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.
ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.
In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.
To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.
There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.
Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.
Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.
I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.
In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."
Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.
Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.
In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.
Sara talks about how this also applies to some degree to the chronically ill. She writes:
Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks... After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. ...Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?
...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.
I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."
I think part of this discomfort is that people don't often know what they are supposed to do to help, and they don't like feeling helpless. ME also brings with it more challenges and complications in this regard than most other illnesses, as we often can't tolerate social visits anyway. It can be hard for some of us to even write or talk on the phone. As a result, the interaction that comes from someone's well-intentioned assistance can sometimes actually be more taxing than helpful. Thus, in the case of ME, some people may keep a distance quite simply because they assume (correctly or incorrectly) that it's in the best interest of the patient.
And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:
I'd always been afraid of sick people, and so had my mother. It wasn’t that we feared catching their brain aneurysm or accidentally ripping out their IV. I think it was their fortitude that frightened us. Sick people reminded us not of what we had, but of what we lacked. Everything we said sounded petty and insignificant; our complaints paled in the face of theirs, and without our complaints, there was nothing to say. My mother and I had been fine over the telephone, but now, face to face, the rules had changed. If she were to complain, she'd risk being seen as a sick complainer, the worst kind of all. If I were to do it, I might come off sounding even more selfish than I actually was. This sudden turn of events had robbed us of our common language, leaving us to exchange the same innocuous pleasantries we'd always made fun of. I wanted to stop it and so, I think, did she. But neither of us knew how.There's no doubt that illness is awkward. It changes the dynamics of relationships, and it reminds others of just how fragile life truly is. And perhaps that's really the core of the discomfort: the idea that our health, and thus our lives, could be turned upside down in a blink of an eye, and there may be very little we could do about it. And that leads to some uncomfortable questions: Why one person and not another? What if that happened to me? Could I handle it? Could I cope?
I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.
I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.
Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.
We want some way to be visible again.