Living With Fibromyalgia- adjusting to invisible illness

Living With Fibromyalgia- adjusting to invisible illness

When I was diagnosed with Fibromyalgia 20  years ago, it literally came in one day.

It felt like a burn in the center of one shoulder blade. There were no marks to see, and it didn’t subside. I was pregnant with my youngest and initially thought it just might be one of those “weird” pregnancy things.

If only.

That began almost a two-year path of countless medical exams, tests, referrals and dead ends. This was still something that some doctors didn’t believe existed, a self-perceived pain cycle.

It was debilitating and quite frankly, scary. I started to doubt myself, but truly…who would make this up? Not me.

What is it like living with fibromyalgia?

There were several mental cycles that I noticed:

1. Fear. What is happening to me and why can’t any doctors help me?

2. Frustration. Thousands of dollars spent trying to find answers and some relief. I had two small children and was receiving no hope. None. At that time the doctors told me that it would last the rest of my life and my only hope was trying to learn to live with it.

3. Denial and Determination. This will NOT rule my life, I can still do everything anyone else can. (Uh, if you are new to this, NO you can’t. Lots? Yes. Differently? Yes. Boundaries? To live more comfortably, yes.)

4. Shame. Realizing that your limitations affect your loved ones. Not being the same woman who my husband married. Guilt at not being the mom always I hoped I would and could be. Not wanting to let people down, but feeling powerless to stop it.

5. Acceptance. This, for me, was the best part. It just “is”. Nothing I did caused it. I can’t part ways with it. Fibromyalgia is here, for now, it seems, to stay. When you learn acceptance and can redefine who you are in a way that makes sense to you, things brighten. Learning how to best live for your specific health needs is part of the deal.

There is no need for pity, which I sometimes get. I can see the good from God even in this, in many ways. Everyone has something in life to deal with. For some of us, it is “invisible”, but no less real.

People with chronic illnesses have doctors

Every day, every hour can be completely different. Fibromyalgia is unpredictable, tolerable, or so unbearably crushing that you can barely cope.

Barely, but that doesn’t count us out. I refuse to feel sorry for my body or any limitations because there is LIFE to be lived! And no reason I can’t live it.

No reason YOU can’t live it. We have so much to be grateful for.

I understand, truly, how hard it is to see into the future on an off day. It is especially taxing when you having physical/cognitive difficulties, and everyone you encounter has advice.

Be gracious. Most people really want to help.

They don’t know if you have spent a decade scouring every piece of information out there.

That their friend’s cousin’s sister’s third child, who might have had it, and eats three oranges a day to heal their body…well, it really isn’t helpful.

Encourage someone you love suffering from Chronic illness

• No fixing. Don’t suggest it is one of these common phrases- “It’s all in your head” (least helpful of all) “You should try___ ” “Just try and ignore it” “But you look so normal/good/healthy”
• And as an aside, don’t massage their shoulders. You might be amazed how many people, in gestures of goodwill, just reach over and start kneading on those tender muscles
• Just be there to listen. They’ll appreciate it more than you know. I am blessed to have a large support circle of love, that watches for me and calls my bluffs. If you don’t, there is a large online community available

Don’t dwell on the negative

You can make it through this, I promise! But it is a slippery slope and depends so much on perspective. Sometimes that feels like that is all you have today…

 Dwelling in despair is dangerous business.  

Should it be tempting, think about my tiny niece who is facing a rare disease called Neurofibromatosis (NF).

Think about my youngest, who now carries my issues, and more.  They are my heroes.

You are too, just for showing up everyday ♥.

Resources to encourage you

• Joy Bible Study for chronic illness sufferers was created by Vibrant Christian Living
• FibroWHYalgia – I’ve had my copy for years, it is still one of the best resources I’ve read
• Weighted Heating Pad 
• Peace in the Storm: Meditations on Chronic Pain and Illness

• Trigger Point Fibromyalgia Pain Relief and Self Massage Hook Cane

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