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I’m a married 31 year-old who has been diagnosed with fibromylagia for 12 years. I am on a quest to raise awareness and help others by sharing information and staying positive. Read more
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Felicia Fibro - Life with fibromyalgia, EMPOWERED!

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What it is like to have an Adult Child with Fibromyalgia – Part IV

This entry is a continuation of the yesterday’s post of my dad’s thoughts on having an adult child with fibromyalgia.

Here are some of my concerns for those in and close to the Fibromyalgia community i.e., those with close family members or friends who have it. Fibro manifests itself differently on different days. Therefore there are good days and there are bad days. The good days contribute to the invisible nature of the condition. For those of us without the condition, it can be easy to fall into a trap of seeing someone on a good day and then locking that in as the norm for that person. We often do not observe, primarily because patients are trying their darnedest to just get through the day, how hard it is for them to do very simple things we take for granted. I have seen firsthand, in the workplace, a person with fibromyalgia being looked down on. I’ve heard the accusatory hushed talk of “She’s just not trying”, “It can’t be that bad” or “She’s out sick today – AGAIN”. This is why I feel that it is very important to be officially diagnosed, and then to officially request workplace accommodations so a person is “on record” with their illness.

The harder thing to remember is to take a stand and be strong. This means that when anybody observes negative workplace gossip they need to educate the gossipers about fibro to let them know how debilitating it can be. Ask them “What do you know about fibromyalgia? Answers to that question will sometimes reveal some really off the wall misperceptions that you can then correct. One of the most unknown facts is the severity of sleep deprivation and pointing out that the person most likely is getting little “good” sleep and still getting to work shows they are highly motivated, not less motivated. Most often coworkers will just silently go along with gossipers, never challenging the lack of knowledge being demonstrated. Being the dad of a Fibro patient, it saddens, disappoints, and it also really ticks me off, that there are those in our world that will hold an illness against someone – especially if that someone is my child, regardless of my child’s age (your children never are too old for your concern). When I see it happen, I am even more compelled to set others straight; and yes, you can do that respectfully, in a positive manner. When you present the facts of the condition, most folks react “I didn’t know that” and are then appreciative to get the information.

We, the friends and family have to take some responsibility to not only be sensitive and respectful to those with fibromyalgia, but to pass along our knowledge to others to help knock down misperceptions. I imagine the most prevalent feeling of being connected to the fibro world is the frustration with others who have absolutely no clue, but are quick to criticize those who have to fight pain every day just to live. By our own initiative, we can support our friends and family members, as well as all those in the Fibromyalgia community, to help bring greater understanding of Fibro. It takes a commitment to teaching others when the opportunity arises. Don’t be afraid to speak up.

You may also be interested in reading my mom’s perspective:

What it is like to have an Adult Child with Fibromyalgia – Part I
What it is like to have an Adult Child with Fibromyalgia – Part II

chest x-ray

Invisible illnesses present interesting challenges!*

*Image Credit: from by Aidan Jones


Comment from Nicole
Time September 14, 2011 at 1:59 pm

This is excellent! Brought tears to my eyes when your dad talked about how others will say, “she’s out sick- AGAIN?”. I got this when I was working. Once in a lunch room we were all goofing around and talking about vacations. I mentioned how I had not gone on any vacation in years. One coworker said well its because you’ve used up all your sick time. It hit me as being so rude and not exactly the only reason I didnt go, money is also a factor. I wonder if someone would say that to someone with a visible illness. I think they would really step back and evaluate their words more. Thanks for a great post!
Nicole recently posted: 30 Things About My Illness You May Not Know


Felicia Fibro Reply:

I completely agree – if we had a visible illness I don’t think people would say those types of comments to us. Not only that, but I think others hearing people say rude comments would defend us more. Clearly your coworker hadn’t even thought about the fact that you may not have even been feeling well enough to go on a vacation. How sad that their ignorance and irritation caused them to loose sight of their compassion.


Comment from Kara
Time September 15, 2011 at 11:46 am

You’re so blessed to have both parents w/ such a great understanding of fibromyalgia and support of you from a distance. They both did a wonderful job of articulating in an informative way.


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