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Feeling Misunderstood and Fibro

Posted on March 12, 2018


Feeling misunderstood by family, friends and co-workers is a common experience among members of MyFibroTeam. Many people don’t understand fibromyalgia, and those living with the “invisible illness” don’t always have the words – or energy - to explain why they can’t get out of bed in the morning. When asked by the community how they describe the painful chronic condition, members shared creative - and humorous - responses. It’s like:

  • Moving through quicksand
  • Wading through syrup
  • Swimming through oatmeal
  • Walking with weights on your body
  • Getting tasered by police at a high voltage
  • Having a heavy wet blanket dropped on you
  • Putting a cinder block on each foot.
  • Waking up a drunk person and telling them to clean their room
  • Charging a phone overnight that only gets to 20 percent and you have to get through the day on limited battery power.

One popular resource shared by members is the “Spoon Theory,” a metaphor to explain “invisible chronic illnesses,” developed by a woman with lupus. One member said, “It helps family and friends understand what it ‘costs’ you to spend your energy on them.” Being part of a group that “gets it” can help those with fibro find the words to describe the experience - or not. “No matter how many analogies I use to describe this condition, the eyeballs still roll, the blank stares still stare. I’m so thankful for this group,” wrote one member.

On MyFibroTeam, the social network and online support group for those living with fibro, members talk about a range of personal experiences and struggles. Feeling misunderstood on what it's like to live with fibromyalgia is one of the top 10 topics most discussed.

Here are a few question-and-answer threads about feeling misunderstood:

Are there any good resources to help my partner understand how fibro affects me?

How do you explain to someone without fibro why we feel such intense pain?

How would you describe your fatigue to a non-fibro sufferer?

Here are some conversations about feeling misunderstood:

Feeling really low as my husband is failing to understand how I'm feeling.

Close family can be the toughest critics. They sometimes take your exhaustion for pure laziness.

A lot of times I feel no one at home even my husband of 16 years understands.

Have another topic you'd like to discuss or explore? Go to MyFibroTeam today and start the conversation. You'll be surprised just how many others may share similar stories.

Feel free to ask a question here.

A MyFibroTeam Member said:

I have same problem, it is so invisible- we need to tell others around us everytime we take a painkiller & everytime we have pain on stretching,… read more

posted 3 days ago

hug

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