By: Sue Ingebretson, ProHealth
What’s fibromyalgia awareness all about? And, do we really need more of it?
Asking those who suffer from this illness to be aware of fibromyalgia is like asking a flame to be aware of its heat.
Fibromyalgia is with us every waking moment (and in many pseudo-sleeping moments as well). We think about fibromyalgia as we get up in the morning, as we prepare meals, and as we function throughout the day. It’s not typically far from our awareness.
Fibro newbies may require more information, but what about the rest of society?
What about those who don’t have fibromyalgia?
They’re predominantly the ones for whom Fibromyalgia Awareness events were created. It’s one thing to express your health concerns and challenges with your family and loved ones. It’s another to try and express your feelings beyond that.
Public awareness is necessary for a number of reasons. Here are just a few listed below:
- To set a precedence and give significance for this important diagnosis
- To advocate for and support the rights of those diagnosed with fibromyalgia
- To inform and educate those who are newly diagnosed with fibromyalgia
- To inform and educate caretakers of those diagnosed with fibromyalgia
- To create a unified definition of what fibromyalgia is (and what it isn’t)
- To create a unified definition of how to diagnose fibromyalgia
- To educate the public as to the truths and myths of fibromyalgia
- To give a voice to the emotions, experiences, and lifestyle compromises brought on by living with fibromyalgia
- To unify patients and their needs with appropriate practitioners and effective treatments
- To share hope and encouragements for new and exciting fibromyalgia treatment options
These reasons are just the beginning. I’ve participated in Fibromyalgia Awareness Day events for more than a decade. I’ve done large-scale walk-a-thons, lectures, book signings, and all sorts of fundraisers. The community events vary widely and even the same organizations change the type of events they hold from year to year.
Why acknowledge fibromyalgia on ONE specific day of the year?
Since 1993, May 12th has been designated as an awareness day for Chronic Immunological and Neurological diseases which includes fibromyalgia, ME/CFS, and more.
Why May 12th?
It just happens to be Florence Nightingale’s birthday. She was – as you may recall – an English Army nurse who contracted a lingering and painful disease that defied diagnosis (sound familiar?). She was an inspiration to all as she pursued her passions to care for others, inspiring the International Red Cross and eventually founding the world’s first School of Nursing.
Focusing our fibromyalgia awareness efforts on one specific day helps for several reasons. It’s more efficient to plan events in advance with the same target date each year. It also makes it easier to plan to attend these events. Most large organizations arrange for their awareness day program to take place on the nearest weekend to the 12th of May. Additionally, awareness day events help to garner media attention for this cause due to multiple public activities taking place on the same day. Many awareness day events continue to take place throughout the month of May (and beyond), not just on or near the 12th.
The fall also happens to be a time of increased activity regarding fibromyalgia awareness. September is National Pain Awareness month and October is Disability Awareness month. Many Invisible Disability organizations organize events for that time of year.
The Fibromyalgia Coalition also hosts an annual conference every fall. This year, it will be held in November and you can find out more about the Fibromyalgia Coalition Conference here.
So, what do you have planned for Fibromyalgia Awareness Day? What do you see as most important when you think of how to increase awareness regarding fibromyalgia?
To start, check out Fibromyalgia Awareness Day information at a national level from the National Fibromyalgia and Chronic Pain Association. On their site, you can also look up support groups in your area to determine what additional events may take place close to you.
Getting involved is always a good way to feel empowered about your own health. Feeling involved helps you to engage in life. It helps you to connect and derive a sense of passion and purpose.
No one can say it better than Florence Nightingale herself: “Live life when you have it. Life is a splendid gift – there is nothing small about it.”
Sue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community. Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.