Tag Archives: excuse

Chronic Illness: The Curse of Invisibility


I, like many others, live within a predominantly transparent bubble behind several masks.

I was taught, as we all were, to wear a mask that conforms to my surroundings and most importantly the people within those surroundings. All to fit within the acceptable confines of my particular place in society, and the position of the people I am conversing with at that time.

We must choose the particular mask to wear for each occasion in order to meet society’s expectations, as we have all been taught (either directly or indirectly)

The (predominantly translucent) bubble I spoke of earlier is reserved for those, such as myself, who suffer from an unseen ailment. These various ailments could be the result of an action or experience (one incident or many) that we have endured, or the profound loss of someone who had a special (perhaps critical) meaning in our life or, as in my case, a chronic illness.

The bubble allows those of us who would otherwise be viewed as flawed, to outwardly project an image of conformity. It protects us making it possible for a vast majority of chronic illness sufferers to answer politely to such mundane and repetitive questions such as; “How are you today?”. Automatic questions that society dictates people ask out of courtesy every day, but inflict upon those of us with an invisible illness an internal and stressful conflict; Do I answer truthfully or do I value this person’s company?

The correct answer and the one expected is, of course; “Fine thanks”. However this answer is lightyears from the truth.

Steangely, if others have a minor ailment such as a cold, or a short term pain or discomfort that will pass within days, people are allowed to respond (to myself and my fellow sufferers astonishment) with an informed and lengthy response. After they have described their minor ailment the acceptable, indeed expected, response is immediate sympathy accompanied by offers of assistance!

Those of us who suffer a chronic illness do not receive such a welcome response to a description of what ails us, for we appear to be in good health (no sniffles, coughs or bandaged limbs). Alas, the exact opposite is true.

Therefore our answers range from a stuttered; “Oh, not too bad thanks” to naming our affliction and then describing detailed symptoms.

Worse still are greetings such as “You look great, you must be feeling much better!” and “You just need some fresh air and exercise and you will be better before you know it”. Indeed a knife thrust into a random body part is often preferable.

My own predominantly transparent bubble is becoming increasingly fragile, for every time I have responded to this unthinking, automatic (but well meaning) question with a “Fine thanks” accompanied by a smile, internally the lie builds and builds. This internal conflict adds to my stress and threatens to collapse and reveal the real me, something we are taught to hide. In truth I am afraid of what I might see.

My chronic illnesses (ME/CFS and Fibromyalgia) are completely invisible to the naked eye. However they are rated by published peer reviewed research as comparable to suffering the same pain, exhaustion and depression of a cancer patient in their final months.

Yet I have also been taught so well throughout my life, through repetition and society’s expectations, to provide the expected response just as quickly and unthinkingly with two little words “Fine thanks”. Once uttered, the lie is immediately regretted.

The internal anger that follows those two words is aimed squarely at my vacuous utterance, the falsehood of my answer and my (quite unreasonable I admit) regret that my illness is invisible.

I recently attempted a slight change to my response, to avoid my bubble from disintegrating followed almost certainly and immediately by my screaming “Can’t you see how bloody ill I am! I bet you couldn’t last a week in my body!”. I answered some greetings with; “Oh, about the same I’m afraid”, and failed miserably. This experimental response was met with confusion, blank looks and awkward prolonged silences. I should have anticipated such reactions as they are perfectly understandable, for my answer disturbs the flow of greetings that society dictates and indeed expects.

The simple and automatic process of a greeting has been irretrievably programmed into our social subconsciousness, and my unexpected answer was outside the acceptable parameters resulting in people not knowing how to react.

I have therefore abandoned this truthful response in exchange for peace and normality. It also preserves my bubble, allowing me some sort of social interaction and protection.

When I am greeted by those who are aware of my true condition and believe and understand it, I answer truthfully and honestly and am rewarded with genuine expressions of sympathy and offers of support.

Unfortunately this bubble varies for everyone forced to live within its confines, and not everyone has people close to them who believe their illness exists and is completely debilitating. This does not allow them to unburden themselves nor receive the assistance, sympathy and support they so desperately need.

With ME/CFS and Fibromyalgia, the illnesses are monumentally painful and include a list of symptoms so crippling you would wonder how anyone could live with them, but the illness and its symptoms are completely invisible. Unfortunately this is why many sufferrers are sadly met with incomprehension and a complete lack of understanding, which often leads to disbelief.

And their bubble darkens and becomes more fragile, another weight to carry equal to all the others combined.

And if their bubble breaks desperation fills the void, followed by even more stress which feeds the illness which then causes more stress…

Unfortunately when someone is confronted with something they do not understand, the social norm is to refute its existence. To not know something and admit to it out loud is to risk being called a fool. If you are a professional in the medical field with years of learning and experience, these illnesses are so rare and contentious that the safest thing for many is to ignore it. Better still, deny it exists.

Many times have I, and people with the same afflictions, been told by a medical professional, “I don’t believe in ME or CFS, as for Fibromyalgia just exercise four times a week for twenty minutes and you will be fine.”

WRONG!!

Countless studies have shown that exercise, even in its gentlest form, causes crashes that can take weeks for us to recover from.

Ten years or more of medical training and experience apparently beats what you are feeling and experiencing and therefore you, the patient, are wrong.

This cannot last as more and more people are presenting with these symptoms. Fingers crossed…if I could as they are too painful most of the time.

The struggle to continually assert to people that we do in fact suffer severely and there are hundreds of A class published research papers and millions of dollars being spent chasing a cure, is ridiculous and exhausting.

The fact that the majority of medical professionals believe their current collective knowledge is ‘obviously inscrutable’ (as it was before penicillin, medicinal cannabis, sterile operating theatres…) and therefore must be faultless and we are fine, just adds the proverbial insult to our injury.

I believe the current scepticism is born and raised on the fact that we appear so damn healthy.

So our bubble becomes solid, unmoving, inscrutable in self preservation. One day it will become so hardened by disbelief that it will shatter, causing us to crash and burn like Icarus but without the luxury of a warning. We simply experience the end of the story, and in too many instances without the preparation or support we so desperately need.

So we constantly use our masks. We smile when we want to cry, cry when we want to scream, and scream into our pillow when we want support and acceptance.

And we may never see our true selves again.