Today is the 20th Anniversary of National Fibromyalgia Awareness Day, a day dedicated to raising awareness around Fibromyalgia. To celebrate, The Fibro-Strong Collective implemented a Fibromyalgia awareness email campaign!
,We emailed a lot of people, and hopefully spread some awareness in the process, and we urge you to do something similar today! Share awareness posts on social media, start conversations with your friends, and if you want to do an email campaign- do it! In fact, we'll share the basics of our campaign with you to get you started!
We emailed a lot of government officials, and you can find your government officials using the Town Hall app on Facebook or on https://www.usa.gov/elected-officials, that's usually a good place to start. Also look for leaders in the industry, influencers, committees, organizations, or anyone else that would matter for the subject of your particular email.
And if you don't know what to say, this is the basic draft that was sent out today (though it was tailored to the recipient):
Today, May 12, 2018, is National Fibromyalgia Awareness day, and as a member of your constituency who has Fibromyalgia, I wanted to take the time to bring this disorder to your attention, so you can keep it mind as you’re making your legislative and agenda-setting decisions.
Fibromyalgia “is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body. Along with other symptoms, pain and tenderness wax and wane over time. Fibromyalgia (FM) affects people physically, mentally and socially. Approximately 10 million Americans (2-4%) have FM with a ratio of about 8 to 2, women over men. It occurs in people of all ages, including children. The literal translation of the word fibromyalgia is pain in the muscles, ligaments and tendons. But FM is much more than pain and presents with many other symptoms that vary from person to person.” (National Fibromyalgia and Chronic Pain Association https://www.fmcpaware.org/fibromyalgia/about-fm.html) While “chronic widespread body pain is the primary symptom of fibromyalgia, most people with fibromyalgia also experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light, and sound, and cognitive difficulties. Many individuals also experience a number of other symptoms and overlapping conditions, such as irritable bowel syndrome, lupus and arthritis.” (National Fibromyalgia Association http://www.fmaware.org/about-fibromyalgia/symptoms/)
As of today’s writing, no one knows what causes Fibromyalgia and there is no cure. Some think it’s a Central Nervous System disorder, some think it has to do with abnormal blood vessels in the hands; others think it’s hereditary, or triggered by trauma- no one knows for sure. There is very limited understanding of this disorder in the Medical Community and patients wait years for a diagnosis, while often-times being brushed-off or told it’s all in their head, or that they’re exaggerating/attention-seeking. Fibromyalgia patients are also often-times demonized as drug seekers and hypochondriacs, thus causing further frustration in an already frustrating situation. I, personally, waited 12 years for a diagnosis, have been accused of seeking drugs more than once while trying to find a solution for my chronic pain, and have heard, “well if nothing has worked for you so far, what do you expect me do about it” from more than one doctor on more than one occasion. I have had Fibromyalgia for 17 years, and in that time I have only found one doctor that has been willing to work with me using a more well-rounded approach to fibromyalgia by monitoring a combination of physical and mental therapy, holistic treatments and medication. Unfortunately, she moved her practice more than ten years ago, and since then the doctors I’ve seen seem to be more interested in providing a prescription that “may help” and sending me on my way with little empathy, compassion, or willingness to deal with my disorder at all (perhaps because they don’t really understand it, and it’s easier to brush it off than build a real relationship with the patient and put in the work to treat it properly, especially without research and guidelines or answers to go by in this sue-happy era we live in). Because of this, I have had to become my own advocate, do my own research, and tackle Fibromyalgia pretty much by myself. This, I’ve learned, is the typical experience for people with Fibromyalgia.
Due to the wide range and severity of our symptoms, people with Fibromyalgia are more likely to have to see several different specialists, pay for more doctor appointments, need more treatments, tests, etc., than the average American, and may not be able to afford it because they may not be able to work full-time or at all because their symptoms make it impossible to do so.
Recent cuts to Medicare, Medicaid, Social Security, and Welfare programs put the Fibromyalgia community, and others like us, at risk. Our healthcare system and our government are failing us, and I urge you to remember us as you fight for a better solution to our current systems, one that does not put us at risk or leave us behind. Furthermore, I urge you to educate yourself, and promote awareness. To propose more government funding for research, and encourage private and non-profit research and support so that we can figure out what causes Fibromyalgia, so we can then find proper treatments for it, and one day- a cure.
Happy Fibromyalgia Day Everyone, I hope you all have a low-symptom day!
- Heather, Fabulous Fibro-Fighter and FSC Founder