When I was still in practice, I saw it all the time: patients with fibromyalgia would come in to see me feeling devastated because their partner - who’d they’d been with for 5 years, 10 years, 20 years or more – was leaving them... ALL BECAUSE OF THEIR FIBRO.
Sometimes their partners actually said so – they didn’t believe in fibro and were just tired seeing their partner lying around all the time. Others were more covert, just drifting away a little more each day. They’d insist that it WASN’T the fibro; it was just that they needed to move on; or maybe it was their own inadequacies that were driving them away. Whatever it was, the emotional pain of the patient in my office was no less. Now, no longer was it just that they hurt everywhere, or were exhausted all the time, or had headaches and bellyaches. No longer was it just that they felt in such a mental fog. NOW they were alone too.
In sickness and in health... no more.
I have questions for those of you who have a partner with fibro, and are having trouble with it, and with them. The first is: what if it was cancer – would you drift away then too? If your answer is ‘Yes’, then there’s not much I can say. But if your answer is ‘No’, then what about multiple sclerosis? Still ‘No’? Then why fibro? Because research evidence is increasingly revealing fibromyalgia to be a neurological disease much like MS. And, much like MS, not all that long ago, MS was called progressive psychogenic paralysis and NOT believed in. People were supposedly just giving up on life; or so psychologically disturbed they’d let themselves waste away to nothing in a bed while not moving. But then, with the advent of advanced imaging scans – first CAT scans and later MRI – MS started to be believed.
THE SAME THING IS NOW HAPPENING WITH FIBROMYALGIA – TECHNOLOGY IS CATCHING UP! In fact, we now have scans that can SEE pain. We now know, because we have seen it, that at least a large part of the pathology that exists in fibro lies in a part of the brain called the midbrain, where there is altered blood flow and abnormal electrical activity in response to a variety of external stimuli – like pain, temperature, and even sound. And a genetic defect has been identified in families in which fibro is rampant. And a variety of other chemical abnormalities have been identified in numerous different body tissues, including the brain, spinal cord, spinal fluid, muscle and nerves. In short, FIBRO HAS BEEN PROVEN REAL.
My second question for you is – what if it was your kid who was sick - would you stop loving them too? Once again, if your answer to this second question is ‘Yes’, there’s nothing much I can say (at least, if I try to remain polite). But if your answer is ‘No’, consider this: Kids DO get fibro, even kids under ten years old. And some outgrow it, but at least 30% do not, and continue to have pain, fatigue and other symptoms well into adulthood, if not life-long. In other words, if you have a child, they could get fibro too... and if you won’t allow yourself to stop loving them, why stop loving your partner?
I know it’s difficult. I know it’s unfair. And I would be a complete hypocrite if I did not acknowledge that I haven’t been the best partner in the world all the time either; but at least my marriage has survived. So recognize that it is difficult for your partner too... and quite equally as unfair. Despite what you might think, almost no one WANTS to be sick. I say this from having seen and treated thousands of sick people... and I never met one who I believe WANTED to be that way.
And I know that extra work may be placed upon you now; and extra worry. And maybe your partner used to share in all that much more than they do now. But then I come back to my first question: what if it were cancer? Would you begrudge that too?
So now it’s nearly Valentine’s Day – the international day of love. And I don’t know how much you want to celebrate or even could celebrate. But here are a few things you CAN do:
· Believe your partner and show that you do in both your words and your actions. Maybe take a little time to read about fibromyalgia beforehand so you understand it a little better; or watch some YouTube videos about it. In fact, if you’re reading this, that’s a good start.
- Sit with them: Just be there for them, even if that means letting the dishes go or using paper plates and not fretting about the bills on that day. Or, if you have the resources, paying for a babysitter to look after the kidsfor a few hours so you and your partner can have some time together and undisturbed.
· Talk with them: Remember those days when you first started dating and sat opposite each other at a table and gazed into each other’s eyes, and all you wanted to do was get to know them and get them to know you a little bit? Well... do that again. Learn about each other... again.
- Turn back the clock, at least for one day: Again, remember back to when you first started to fall in love, and all you wanted to do is hold and protect them, and care for them. Feel like that again, even if for just this one day. And maybe throw in some flowers and/or chocolate and/or breakfast in bed, and/or time together in a hot tub.
But, most of all, take this day to recognize that dealing with fibromyalgia isn’t easy... for anyone.
Then again, neither is life all the time... is it?
Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker