The Tragedy of Fibro: Truth or Hyperbole



In my last appointment with my rheumatologist, we discussed how most of the pain I have is related not to active RA (thank you, Humira!), but rather RA damage and fibromyalgia. And then she said something that’s stuck in my head since:

“That’s the tragedy of Fibro. If someone has RA or lupus, we can treat it. We can’t do much about fibromyalgia.”

Tragedy?

Instinctively, I recoiled from the concept. It’s a really big word, a word I’d normally apply to devastating events in the news, such as the Ebola outbreak, the Holocaust, or the Australian woman who killed all her kids. Those are tragedies. My Fibro? Sure, I’d rather be without it, but it’s not on the same scale.

Is it?

I thought about it. I can see how, from a doctor’s point of view, an untreatable condition that causes high levels of chronic pain, preventing your patient from living their life to the fullest could be considered a tragedy. Doctors, after all, really like to fix things. Their goal is for you to be healthy and have a “normal” life.

And then I thought some more. I thought about how I finally, after decades of living with RA, found a medication that worked. It has not reversed the damage I have, but the misery of active RA is held at bay by this wonderful drug. And just when that miracle happen, Fibro came along to mess with my ability to take full advantage of my new life.

Fibro determines what underwear I can wear, how I sit, how far I can move, how heavy my cat can be. It interferes with my work life, my social life, and my sex life. It prevents me from using any scented products, requires me to gas off electronics, photographic prints, and carpeting in another location for weeks before they can enter my apartment, mandates a late afternoon lie-down, and stops me from getting a tattoo. It causes my pain levels to randomly and quickly go from tolerable to the kind of pain that has you sitting and rocking. It means that any minuscule change to my wheelchair — for instance, something as simple as my footrest slipping a millimetre or two — triggers extreme pain in the rest of my body. It means I can no longer go on a ride as a passenger in a car, use my manual chair, visit friends in their homes, dance, travel to other countries, hold and read a regular book… And the list goes on.

I still believe ‘tragedy’ is an awfully big word, but the more I thought about it, the more I began to agree with my rheumatologist. This condition is pretty awful. Okay, I won’t modify it.

Fibro sucks. 

Wait, that’s not honest, either. Fibro has stolen a big part of my life.

The problem with admitting the true impact of Fibro is that it leads me down the road to the if onlys. If only I could still travel, if only I could get through the day without a nap, if only I could colour my hair, if only I could be comfortable in my wheelchair, if only my life were easier. Looking at what I don’t have, what I can’t do, what I’ve lost, is devastating and depressing. Looking in to this abyss is dangerous — it takes your peace of mind, your joy, your soul. It sucks you dry and leaves you an empty husk of regret.

Instead, I focus on what I can do and how I can mitigate the impact of Fibro. The nap, the pain killers, the ultrasound — they all reduce the pain levels, make it easier, help me live around Fibro instead of in the depth of it. I turn the focus and instead of regretting that I have to use them, I am thankful that I have these tools that can help me get my pain to tolerable levels so I can live my life to the best of my ability.

At the end of the day, I don’t have a choice about having Fibro, RA, and a disability. But I have a choice about where I live, where I spend my days, to what I will grant my attention. And I refuse to live in a tragedy, because my life is about so much more than these diseases. 

I choose to make my life about joy and love and laughter. And there are times where the Fibro, the RA, the pain, the limitations, make the joy, the love, and the laughter shine more brightly, lighting up my world and pushing back the darkness.

I’ve made my choice. What is yours?
   

Comments

Caroline said…
I have fibro and RA and more. They have sucked parts of my life away but the way I see it, I am still here. I take naps, I go to lots of doctors, but I have dealt with a lot more healthwise. Its not a tragedy. It just sucks.
12:24 PM
Anonymous said…
Thanks Lene, for your thoughtful post. I do really wonder about the diagnosis of fibromyalgia. I NEVER question people's symptoms but I do question such a catch-all label that has no objective tests (particularly labs), mostly ineffective treatment, and a majority of doctors who question fibromyalgia's legitimacy. Fibromyalgia was only recently given credence by the American College of Rheumatology.

There is SO MUCH that needs to be learned about chronic musculoskeletal pain - it's origins, the pathophysiology, co-morbid conditions, etc... As I've posted many times before, central pain theory and other goofy concepts don't lend much to the field of medicine, in my humble opinion.

I totally empathize with those of us who have chronic pain from medical conditions that are poorly understood. I also agree with your analysis of how to perceive such conditions, Lene. As I know you know, it is important to acknowledge and grieve what we've lost. I think you're implying, though, that to live in a belief that we're dealing with tragedy isn't particularly helpful.

Merry Christmas to you and yours and to all of us who face the challenges of chronic health conditions. Blessings and peace to all. From Helen.
4:01 PM
Diana Troldahl said…
GREAT post!
11:14 AM
Post a Comment

Popular posts from this blog

Farber’s Disease: Could Your Child’s Juvenile Idiopathic Arthritis Be Misdiagnosed?

Image
Joint inflammation or contractures. Nodules (small lumps under the skin or in other tissues). A weakened or hoarse voice. Children with these symptoms may have been diagnosed with juvenile idiopathic arthritis (JIA) or other types of juvenile arthritis . But do they actually have JIA or do they have Farber’s disease? An equine digression When you hear hoofbeats, think horses, not zebras. This is an adage in the medical world that encourages doctors to not wander off exploring rare and esoteric reasons for a patient’s symptoms. Because most of the time, that hoof beat of a rash likely isn’t the plague, the joint pain more likely a type of arthritis than the bends (especially if the person has never scuba dived) and you get the picture. But once in a while, it actually is a zebra. And even if it’s first identified as a horse, eventually, the stripes come through. It took five years of my parents running around to different doctors before one finally recognized that I had...
Read more

13 Things to Know for Rheumatoid Arthritis Newbies + Facebook Live

Image
Getting a diagnosis of any type of chronic illness can throw you for loop. There is so much to know and you have so little energy. My new slideshow for HealthCentral collects 13 things you need to know as an RA newbie : "Receiving a diagnosis of rheumatoid arthritis (RA) is a moment of strange duality. On one hand, you may be relieved to finally have answers for the symptoms you’ve been experiencing. On the other, it can be incredibly overwhelming to find out you have a chronic illness. Wrapping your head around all the new factors RA brings into your life is a long-term process. Here are some of the things you need to know." See the slideshow on HealthCentral . And in case you missed it, here is the Facebook Live I did yesterday talking about this topic:   
Read more