Invisible Illness Awareness Week- My Fibromyalgia Advice

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I know someone who is suffering a great deal with an illness that is not visible to others. She is in what I’d call the beginning stages of the journey. I know all about this journey, as I too share the same illness. In a raw and personal post, there were cycles for me that I will share hoping to encourage others. When I was diagnosed with Fibromyalgia almost 15 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 or could make this up? Not me. Long story condensed, 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 sympathy, 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.

Every day, every hour can be completely different. Fibromyalgia is unpredictable and can be 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. If you are looking to encourage someone you love suffering? Listen. 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.

My suggestion is to learn to accept that day for what it is, rest as you are able, and plan on tomorrow being better.  Dwelling in despair is dangerous business. That is why I’d like to share the work that Lisa Copen does for so many, in spite of her own challenges.

This is Invisible Illness Awareness Week. They are offering conferences, and much more over at Rest Ministries. Check them out. You might know someone who can be encouraged.  http://invisibleillnessconference.com  She also had a feature article “8 Ways to Annoy a Friend With a Chronic Illness” which I appreciate for drawing national attention to a serious circumstance. You can find it here http://www.huffingtonpost.com/lisa-copen/etiquette_b_1864792.html.

Two resources I would highly recommend:

FibroWHYalgia by Susan Ingebretson- the best I’ve read. Would be excellent for readers who have a loved one suffering. She advocates “Listening is the key to wellness.” She clarifies in wonderful detail what Fibro is with many examples. “Stress is a primary fibromyalgia trigger…When danger subsides, stress chemicals diminish. For fibrofolk, the brain gets “stuck” in stress mode. Continuous bombardment of stress chemicals caused dame to the nerve control centers in the brain.” And she is funny. Can’t beat that in a health book, eh?

Peace in the Storm: Meditations on Chronic Pain and Illness by Maureen Pratt

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