by Linda Batey

Created on: May 09, 2010

Fibromyalgia is hard enough for a person to deal with, and without family support, it can make living with it all that much harder. 

Many times, the family has not been educated properly about fibromyalgia.  They don’t realize how fibromyalgia can affect every inch of the body in various combinations, affect sleep, mood, concentration, bowel action, flu-like pain, headaches, dizziness, among other symptoms—all things that are invisible to others.  Symptoms can come on like a surprise visit from an in-law and no idea when they’re going to leave. 

I get tired of complaining. There are days that I feel on top of the world and can do almost anything. If I don’t sleep well, the next day is usually not so wonderful.  I can wake with pain from the top of my head to the tips of my toes, barely able to navigate to the bathroom to deal with the diarrhea.  My plans for the day have gone out the window; I will be hanging out in bed today, napping and taking painkillers. When my husband calls, he will know from my voice that things are not well and he immediately knows two things: dinner will NOT be served and the kitchen will look exactly like it did when he left in the morning. And he’s fine with it.

My diagnosis came in 1992 after lots of appointments with doctors who had no answers. In 2004, my doctor prescribed Cymbalta for me, which shortened the duration of my flare-ups and the severity. It has been a blessing to me because I cannot imagine how bad flare-ups would be without it. 

I had no choice but to educate my family about fibromyalgia and one of my daughters understood it well-she has it too.  I’ve had to cancel overnight visits from grandkids, skip Church and Church functions, lunch with my girlfriends and have pretty much had to give up golf.  I cannot ever rake, sweep or vacuum. I cannot hammer, saw or shovel snow.  My husband took over all of those jobs, bless his heart. My Church family understands that they cannot give me big hearty hugs with loving slaps on the back or arms—excruciating!    

I’ve had to educate those around me and once I did that, I received their support. I have to speak up for myself and tell people that I can’t always be relied upon to be somewhere at a certain time or participate in some things; I simply cannot predict when I will have a flare-up and how bad it will be.  Our friends and family are not mind readers and it’s up to us to let them know when we are hurting. If they ask what they can do to help…just ask them to be understanding (and maybe sweep the floor). I discovered that those friends who chose not to understand were negative people that I didn’t need in my life anyway.  Having fibromyalgia is bummer enough with other people bringing you down.

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