A day in the life of…

6:30 AM. You’ve had 9 hours of sleep, yet you can’t seem to be able to wake up. You function on auto-pilot and get going in a zombie-like state.

9:00 AM. Your friend gives you a call. You talk about next Sunday’s get-together. You are making plans for the picnic when suddenly, mid-sentence, you can’t even remember what you were talking about.

12:30 PM. You’re hungry and you head for the kitchen. You are eager to eat last night’s leftovers.  Except when you open the fridge, you can’t remember what you were doing in the kitchen in the first place.

6:00 PM. You meet your Mom for dinner. She tells you all about her vacation plans for the summer. You stare blankly and while you can hear her words, you cannot exactly make sense of what she is saying.

The above sounds quite unrealistic. Yet, for millions of people, this is a reality.

And for millions more, fibromyalgia is still an absolute mystery. Unfortunately, fibromyalgia is to be counted among the “newer” medical diagnosis, and as such is widely misrepresented and misunderstood.

Some people even believe it is a fake diagnosis, part of some elaborate scam to stick it to the man, whoever the man might be…

But fibromyalgia is not a punchline. I can guarantee you that if you asked fibromyalgia patients to give up all of their material goods in exchange for a life free of symptoms, most would not even hesitate.

I do not wish for anyone to receive the dreaded call from the doctor informing you that you, indeed, have fibromyalgia.  It is a scary and lonely diagnosis.

This very serious medical condition is among the least understood in our modern societies.

Most symptoms are invisible, and thus physicians must rely on the patient’s accurate, yet subjective, description of “feelings” and “pains” that cannot be formally measured.

Any time a patient’s opinion is necessary to establish a diagnosis, the credibility of the ailment is called into account.

After all, a patient cannot possibly know their body better than anyone else.  Therefore, a patient’s account of symptoms cannot be trusted. Or so are we told by bystanders who cannot bear to be unable to place with certainty individual suffering on a metered scale.

Can this be a real issue?

So in short, the lack of physical evidence leads to the conclusion that the ailment is not, and cannot possibly be, really.

But here is the thing: there is physical evidence that helps with the identification of fibromyalgia as the culprit for various symptoms.

There are physical trigger points well known by all rheumatologists and neurologists around the Globe. So unless the naysayers can establish these highly educated doctors are in on a twisted conspiracy theory (with an unknown purpose or agenda!), fibromyalgia is the best explanation we have for a battery of symptoms, visible and invisible, affecting the millions of people aforementioned.

For the longest time, fibromyalgia patients had to almost be ashamed of their condition.  And for good reasons.

Who wants to be subjected to laughter and be the joke of the hour at a neighborhood gathering when you explain you cannot go for a walk with everyone else because you have fibromyalgia?

I am unsure what part of this scenario is enjoyable and would be sought out on purpose.

Who wants to be the gossip of the hour around the water cooler at work? I am pretty sure no one in their right mind would try to fake such a debilitating condition.

With the identification of the disease, more and more people were given the solace of knowing what was wrong!

Those who had been suffering in silence for years, if not decades, were finally given the relief of knowing that it was not “all in their heads,” as they had been told over and over until now; people who had been ashamed to confess their “imaginary” condition, people who had been wondering if they were “going crazy”; people who had gone from doctor to doctor in the hopes of finding comfort; all of these people now had a name to put on their problem. And what a relief this must have been for those diagnosed in the early days of acceptance!

The doctors and medical research pioneers continue to make great strides toward a bright future, a future where pain has been eradicated and invisible illnesses are no longer to be hidden for fear of ridicule.

But until the day arrives when each and every one of us can proudly say they have beaten the odds and have their fibromyalgia symptoms in check, we must continue as a society to accept those who suffer in fear of being made fun of, or bullied by our friends or family, or belittled by our own families, until this day arrives, we must stand in solidarity with one another.

We must make it our unwavering priority to educate as many people as we can about fibromyalgia, and its invisible symptoms, such as Fibro Fog.

Only through sharing of facts can we help everyone in our lives understand what really goes on, and how they can help us.

What about that Fibro Fog?

Whether you have been formally diagnosed with fibromyalgia, or whether you suspect you may have fibromyalgia, chances are, you have experienced “Fibro Fog” at one time or another.

Fibromyalgia is a chronic medical condition that can affect anyone. The main symptoms are a musculoskeletal pain, tenderness when specific trigger points are palpated and fatigue.

There is no cure, but treatments exist that may help keep flare-ups under control, and may help alleviate pain.

Fatigue is not an uncommon side effect of many chronic conditions, fibromyalgia included.What is unique about the fatigue induced by fibromyalgia is that it is not simply a physical fatigue.

Sufferers have reported that the fatigue they experience is more of a brain fatigue than a body sensation.

Being physically exhausted is, well, draining. But being mentally exhausted is downright scary for first-time sufferers.

And the distinction between the two is one that is hard to comprehend for those who have never been in that position.

Imagine an overwhelming feeling of helplessness, accompanied by a severe lack of energy, taking over your mind and body.

Now add an inexplicable inability to collect your thoughts and get the right words out.  Sprinkle some confusion on top, and finish it off with forgetfulness. And voila.

You have an approximate idea of what Fibro Fog might feel like.  Of course, one must not forget to take into consideration the physical impairments that make fibromyalgia even more unbearable.

Combining the mental and physical effects of fibromyalgia is enough to make anyone a prisoner in their own body.

Some have described Fibro Fog as being a clouding of consciousness, almost an altered state.

While it is not as pronounced as delirium or amnesia, the clouding of consciousness manifests itself as an abnormal variation of one’s conscious state.

In other words, a person suffering from Fibro Fog will not lose control over their mind entirely, but the abnormality will be significant enough to impede on the patient’s everyday life.

What does it look like?

From the observer’s point of view, an episode of Fibro Fog may look like the person is uninterested in a conversation, distracted, forgetful and sometimes even rude.

Indeed, who would enjoy the company of someone who cannot participate in banter or who appears to refuse to engage in meaningful exchange?

Fibro Fog is one of many silent and invisible symptoms of fibromyalgia. Unfortunately, due to its elusive nature, it is sometimes hard for sufferers to bring others to understand what it is like.

After all, friends can only handle being rejected so many times before they give up. Pretty soon, your friends won’t even bother calling you to see if you can go out with them.

Between the days where the pain is too intense, and the days where your brain will not cooperate, life can become quite difficult and lonely.

But it doesn’t have to be that way.  As a community, we need to educate people in our lives about the hardships we encounter.

As a fibromyalgia patient myself, I can tell you that the scenarios presented at the beginning of this article have all happened to me.

As hard as it has been to disclose my diagnosis to family and friends, it was the right thing to do. And it is for you, too.

The invisible symptoms of fibromyalgia are the most difficult ones to explain. Most people have no idea what it feels like to not have 100% control of your own brain.

At first, advice rolls in from every corner.  “You should take a nap,” “You should go to bed earlier,” “If you only do one thing at a time, you will remember what you were doing,” “Concentrate,” “You should make a greater effort to listen.” And so many more.

As a well-adjusted adult in a polite society, you respond with a smile. You patiently listen to the countless, useless, tips people who have no idea are ready to give you.

And then comes the best one of them all: “Just snap out of it!”

Oh, my!  If only you could! If only it were that easy!

But think about it. The same people giving you hollow advice would never in a million years dare tell a cancer patient to snap out of it. Or tell someone with a broken leg to just walk it off.

So why is it acceptable to basically shame fibromyalgia patients who are brave enough to share their suffering? Well, first of all, it shouldn’t be. But since it is, here is why I think things are so hard for fibromyalgia patients.

The condition is widespread, and its official inclusion in many medical journals is recent.  What does that mean for patients? The condition is not well-known.

People have a tendency to fear the unknown. And one way to feel more comfortable about something is through derision. They call it humor, but we feel otherwise.

We hear them, and we see mockery and ill-spirited remarks.  It’s an eye roll and an exasperated sigh. You know the type. You’ve experienced it. “Oh sure, you have that made-up disease, fibro-something.  Whatever.”

But you don’t have to be ashamed. How can we expect people at large to understand what it is like if they have never been told what it is like?

Education starts with us, the patients.  It is our responsibility to make sure our friends and family know what we are going through.

They need to hear it from us. We cannot expect others to avoid clichés and misunderstandings if we do not offer them an alternative.

It is basic human nature to want to understand what happens. If we shoot down one idea without offering a viable counter-idea, it is not productive or constructive.

Now what?

Here are a few things you can tell your loved ones regarding Fibro Fog. These could also work for your boss, your coworkers, the PTA moms and the guys at the bar.

Just take a deep breath, remember that you have done nothing wrong, and free yourself of the burden you carry on your own.  You deserve it!

• I know sometimes you feel like I am not paying attention. I am sorry. I am not doing it intentionally. I really want to be a part of the conversation, but when my Fibro Fog flares up, ideas get jumbled up in my brain and I can’t think straight.  Can you repeat what you were saying bit by bit?
• The idea of going out tonight scares me. Sometimes, my Fibro Fog shows up, I get very confused. I may not remember where I am or why I am there. I would prefer to avoid that situation as I fear it could get me in trouble. Can we order pizza and watch Netflix instead
• I understand that I appear lazy when I can’t get off the couch or get out of bed. I am not trying to be lazy. The Fibro Fog is clouding my mind. It is giving my brain false signals and makes me feel as if I have not slept in three days. I will feel better in a couple of days. Can we reschedule our coffee date for Thursday?
• I know I sound incoherent at times. If you could let me know when my words are out of sorts, I would greatly appreciate it. Be gentle, please. Just let me know you don’t understand me at this time. I will regroup a rephrase.
• The ideas in my head are making sense, but I can’t find the right words right now. Maybe we can talk about this in a couple of hours?
• The words you are speaking are making sense individually. You don’t need you to speak louder, as I can hear you just fine. And I am paying attention to our interaction. I cannot connect your words together to understand what you are trying to tell me. Sometimes, using different words will be enough to flip a switch in my brain. Try rephrasing what you are saying, and chances are, we will be on the same page.

These are simply examples of how you could handle different situations you may encounter.

The list of situations where you may have had to justify yourself is probably a mile-long. We all have different life experiences, and in turn, it means we all feel the invisible symptoms of fibromyalgia differently from one another.

And that is absolutely normal. Think about: there are no two identical bone fractures, no two identical cancer patterns, so why would there be identical fibromyalgia symptoms, whether they be visible or invisible?

Fibro Fog is just like any other invisible manifestation of a physical ailment. It is felt differently by different people.

Just because the neurological symptoms are “all in your head” does not mean they are “all in your head!”

So this is it?

Not everyone will understand where you come from, and how much it affects your daily life. And some might even already know a thing or two about Fibro Fog. Your family and friends will support you along your journey with love and compassion.

And if they do not understand this time around, tell them again. You have fibromyalgia, and you are amazing. You are not a quitter, and you totally have this under control!

Have you told your family and friends about your fibromyalgia diagnosis? How about your boss ad your co-workers, do they know? How did you break the news? Was it easy?

I would love to know how you, the Fibro Army, have explained Fibro Fog to the people around you, and how your explanation was received. Were your loved ones compassionate? Was your boss understanding? Or have you been met with a wall of misunderstanding?

Tell us in the comments. And let this be our very own Fibro Safe Place – no judgment, no such thing as a stupid question: only positive support and understanding!