Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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3 Comments

  1. THANK YOU SO MUCH!

  2. Thanks for your article. This is so me and probably more times than not. I wish people would understand. I wish I could understand

  3. They say I do NOT have fibromyalgia, but I have every symptom listed in your comments. 2 Rheumatologist and 2 Neurologists have said I don’t have enough points. I spent 2 weeks a Mayo Clinic and was finally diagnosed with CENTRAL SENSITIZATION SYNDROME. It is A LOT like Fibromyalgia and pain unseen by others is still questioned by orhers. It’s a nightmare. Has anybody here been diagnosed with CSS? If so, what do you take for it and what do you do to help it?

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