May 28

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Fibromyalgia Myths and Roles

By Sue Ingebretson

May 28, 2019

Awareness, chronic illness, Fibro, fibromyalgia, identity, myths, patient, roles

Fibromyalgia Myths and RolesMyths about fibromyalgia roles block healing opportunities. It’s time for some major disclosures about this last and final myth. In today’s post of this 10 Myth series, we’ll shed light on the biggest myth of all. Who YOU are as the patient.*

What role do YOU play in your own health journey? Are you sitting back to wait and see?

Myths of Fibromyalgia Roles

Or are you grabbing the wheel and shifting into drive?

I’ll admit – I’m much more comfortable with the “wait and see” perspective myself. That’s my natural tendency.

However, I had to take the uncomfortable steps needed to change this tendency. Sitting in the backseat of my own life didn’t get me the windshield view of the world I needed.

When I got into the driver’s seat, I suddenly realized how much of my life I’d handed over to others. How many decisions I’d left to those who I thought were better educated, better resourced, and better prepared than I.

But I learned the hard way, that belief kept me stuck.

Your personalized health journey has to be navigated on your own terms. Sure, others can chime in. In fact, it’s critical to assemble your own team of support persons. But make no mistake. YOU must be the team captain.

But first — 

Fibromyalgia Myths 1-9 Recap

Here are the quick links to the previous nine myths in our journey to dispel fibromyalgia fallacies. If you haven’t already, you’ll definitely want to check ’em out. 

Part 1 

Part 2 

Part 3

*A Quick Side Note on Fibromyalgia Roles as “Patients”

I struggled with this. When I wrote that first paragraph, I looked for an alternative to the word, patient. I dislike the connotation of being at the mercy of someone else. Consulting my trusty thesaurus, here’s what I found:

case, inmate, subject, sufferer, victim, convalescent,

emergency, invalid, outpatient, shut-in, sick person

As you can see, the options are slim pickins. Nothing on this list feels preferable to me. What about you?  

Consider this as you read on.

#Fibromyalgia Myths and Roles - What Role do YOU Play? #FibroAwareness Click To Tweet

Fibromyalgia Myth #10 – Role Models

So, here we go. Let’s dive into the 10th Myth when it comes to dealing with Fibromyalgia and Chronic Illness. The myth regarding the role YOU play.

 Myth #10 – Some doctor, guru, product, prescription, etc. is going to “heal” you.

At first glance, you may see a similarity between this myth and myth #3 – there’s no ONE particular healing solution. But, this myth goes deeper. Much deeper.

This myth exposes a critical point.

Are YOU in charge of your own healing plan, or do you hand over that role to someone else?

That’s what I did … for decades.

I believed that around each corner, some all-knowing doctor, nurse, researcher, chiropractor, naturopath, or dietician would hand me the keys to the locked box of answers.

With ignorance, I believed that the “job” of discovery belonged in someone else’s hands. Not in mine. After all, what did I know? I was sick! I didn’t have the education, experience, or even the oomph needed to figure it out.

Or, did I?

At some point, I finally asked myself, “Am I an active participant in this health journey or simply a spectator?” I realized the only one who could change that positional perspective was me.

Finally, I put on my own team captain’s hat. I created and gathered my own team to surround, encourage, and support me.  

When You’re Not in a Leadership Role

Years ago, I worked with a woman who was very knowledgeable about fibromyalgia. She was a registered nurse and had many medical professional connections.   

She often asked me about the dietary changes I’d made to assist in my fibromyalgia recovery. Although interested, she let me know it was a wasted effort. She shared, “My doctor says nutrition doesn’t make a difference for fibromyalgia. I’m taking anti-inflammatories, statins, and diabetes meds.  So I don’t have to change what I eat.”

Making lifestyle changes were not in her health plan. Her legs were so swollen, that walking was difficult. Her home was filled with a lot of drama, family issues, and stress. In addition to her busy schedule, she spent every spare moment attending workshops and seminars that boasted new discoveries in the medical world and offered information on new medications “coming down the pipeline.” She’d call me up very excited about what was coming soon.  

On several occasions, I was called to her home to try and help when she was desperately ill. But, she never did make any changes. Her health deteriorated.  

Why?

The main reason, I believe, was due to the role she played in her own life. She was always waiting for someone else to give her the solution. Eagerly, she waited for a new pill, treatment, or a magical “fix” for the “broken fibromyalgia body.” As such a lovely and compassionate woman, it was hard to watch her become so ill. She cared deeply for others. Yet, solutions eluded her.

Let me be clear.

There’s nothing wrong with having faith in your doctor(s). I hope you do. And most of them are doing absolutely everything they can to help the patients in their care. There’s also nothing wrong with taking medications and looking forward to new information and new medical breakthroughs.

But can you see how this person allowed herself to become compromised by her beliefs?

Her decision to hand the controls over to someone else meant that she made no changes at all.

When it came to her health plans, she was a passive passenger.

When it comes to your health plans, YOU’RE the CEO.

No one knows your body as YOU do.

What To Do Now?

While the rumors, myths, and outright untruths about chronic illness persist, there’s still a lot of GREAT information out there on the expansive web.

It’s my prayer that you put on your own “sorting hat” and decide what feels like a next step for you. Create your own support team. Pay close attention (as a CEO) to what you read, hear, and see.

Use these ABC’s for reference as your journey begins to find a coach, mentor, or guide. It takes time and effort to assemble your team. Membership of your health team is a constantly changing and improving activity. People arrive in your life to help when you need them. Help comes in many different forms (many of which are quite unexpected!). Some come to spread the good news of healing. Some come to spread something else.

From here on, when you sift through what you read and hear, consider these questions —

  1. Does she/he share news that’s encouraging, enlightening, and informative?
  2. Does she/he often or only share negative news that leaves you feeling unmotivated and certain that making changes would be hard or ineffective?
  3. Does she/he share his or her own recovery story? While it’s helpful to share “here’s how-to-heal” info, has she/he actually done it successfully for themselves?

Remember that you’re in the driver’s seat – you get to choose what’s next.

That’s YOUR role in your own

fibromyalgia and chronic illness journey.

  1. BRAVO! I could t have said it better. Thanks for sharing some empowering truth!

    1. Cynthia – you’re so very welcome! I hope you enjoyed the other 9 myths as well. It was a fun series to explore!

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