How and Why to Raise Fibromyalgia Awareness


How Do You Go About Raising Awareness?

There are many causes out there vying for the world’s attention today, including ALS, which was brought to everyone’s attention in 2014 with the popular ice bucket challenge. There may not be a hugely successful marketing campaign for fibromyalgia (yet!), but there are other ways to put the spotlight on this illness.

Some things you go do from home to raise awareness:

  • Host a Facebook page – Setting up a Facebook page is fairly easy and you can opt to reach people locally or in a wider geographical area. The more likes you get, the more you can spread the word! Post articles about that educate about fibromyalgia. Get on your soapbox and tell everyone about it!
  • Join your local fibromyalgia support group – If there is a fibromyalgia support group in your area, be sure to join! If there isn’t any such group, start one yourself. This is a great way to connect with fellow fibro sufferers and pool ideas for raising awareness.
  • Contact your local representative – Correspond with your local state representative about fibromyalgia. You may want to lobby for improved care pathways for fibro and chronic pain. Government officials need to be aware of the pain and other debilitating symptoms that make it difficult for you to work or do normal day-to-day activities. The more personal the message from you, the more powerful it is.

Raising Money

Raising money for the organizations that lobby for fibromyalgia or do research to find treatments is another way to help raise awareness while at the same time benefiting these groups. You can donate to American Fibromyalgia Syndrome Association (AFSA), the National Fibromyalgia & Chronic Pain Association (NFMCPA), or the National Fibromyalgia Association (NFA).

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There is a variety of fundraising activities you could do — some simple, others huge undertakings. Think about what you can manage before committing to anything — you don’t want to end up in the middle of a flare-up as a result of fundraising for fibromyalgia! You could try:

  • Sponsoring for a marathon, sporting event, or a non-swearing day
  • Going without chocolate, pizza, TV, video games, texting, talking on the phone
  • Sell rubber wristbands for the fibromyalgia cause
  • Sell arts and crafts or do a craft show
  • Organize a car wash or do odd jobs
  • Karaoke evening or trivia night
  • Bake sale or raffle
  • Fashion show
  • Charity dance, dinner or wine tasting
  • Kids’ carnival

It is best to have literature like pamphlets people can take with them with your message on it. You can also set up a booth at your events that focuses on your message. You can strategically place images and perhaps a video that discusses fibromyalgia awareness.

Speaking Out

When you act as a self-advocate, you are often addressing personal health issues. Try speaking out to the medical community; you will need to encourage them to listen to your concerns and fight to have the condition recognized as legitimate. Once you’ve got their attention, move on to working towards making the changes in medically directed care for fibromyalgia patients.

Speaking out on your own behalf can be intimidating — no matter how passionate you are about your cause. Being surrounding by professionals whose technical knowledge exceeds your own can be daunting. The more often you speak out, the easier it will become. You will learn to communicate with medical professionals in a way that gets your point across.

Here are some points to remember as you begin your journey of self-advocacy:

Your rights, thoughts and needs are just as important as everyone else’s — you deserve to be treated with respect and dignity. Identify what you would like to see accomplished and what obstacles you face in your healthcare as a result of your fibromyalgia.

Be respectful, even if you find yourself upset. But don’t beat around the bush; speak up and be direct about the problems you are facing.

In discussions, you should be an active listener and always ask questions. Try to see everyone’s point of view and clarify with questions. You may have to reach a compromise and there may be disagreements — remain calm and collected when you respond or react.

Discuss your concerns in a way that does not place blame. Rehearsing your speech will help you to feel more comfortable.

Stand up for yourself and confront people who challenge you and your rights. Be assertive, but not aggressive.

Accept criticism, compliments and feedback. Seek to collaborate and form alliances. Keep an open mind for the problems you face.

Be informed about fibromyalgia and relevant information. You need to do your research.

Keep records and document all meetings, and keep any correspondence pertaining to the meetings.

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Yvonne BanksYvonne Banks

Yvonne is a licensed practical nurse who has a passion for helping people to improve their health conditions. Practicing since 2001, she has worked with both geriatric and pediatric patients during the course of her career.

Feb 1, 2017
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