Standing Together on Fibromyalgia Awareness Day Fibromyalgia Community

Nearly one in every two people in the United States has a chronic illness, and of the people who have a chronic illness, 96% have an invisible illness. Many organizations have been making efforts to increase awareness of invisible illnesses. This month, there are several observances for different invisible illnesses, one of which is Fibromyalgia Awareness Day.

Fibromyalgia Awareness Day is May 12^th

Fibromyalgia can be a devastating disease, with potential symptoms including widespread pain, sleep disturbances, and cognitive difficulty (often called “fibro fog”). It’s estimated that about five million people in the United States live with fibromyalgia, and yet most people without fibromyalgia have almost no awareness about this disease.

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The theme of Fibromyalgia Awareness Day this year is “Your Voice Matters,” which encourages people to use their voices to advance support, advocacy, research, and education for fibromyalgia and other chronic pain illnesses. This is particularly important because, for many people, the stigma around invisible illnesses still exists. Diseases like fibromyalgia that can’t be seen are sometimes written off as “all in your head” or whining, but this couldn’t be farther from the truth. The first step to change this misperception is to start a discussion about fibromyalgia and other invisible illnesses on Fibromyalgia Awareness Day.

Additionally, research and education about these types of illnesses are vital. Funding research can bring medical science closer to understanding how to treat and, eventually, cure fibromyalgia and other invisible illnesses. Educating people and making them aware of the symptoms of these diseases can help them understand how to manage their health. Also, knowing more about which symptoms are relevant can sometimes make it less difficult to diagnose fibromyalgia or other invisible illnesses, which can be very difficult to tell apart because of their similar symptoms.

International CFS/ME Awareness Day is also on May 12^th

Chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) are two closely related diseases; according to some sources, they may even be the same disease with two different names. Both cause overwhelming fatigue that’s not relieved by rest as well as cognitive difficulty (“brain fog”). Additionally, both CFS and ME cause pain, often muscle pain that radiates from the spine.

There’s quite a bit of debate about the difference between CFS and ME. Some sources state that ME is caused by a viral infection; the infection causes damage to the brain stem and brain that’s visible during testing. In addition to this, ME tends to have a sudden onset, so distinct that some patients can even name the exact hour when they began to experience symptoms.

CFS causes a similar set of symptoms as ME. However, there’s no known cause for CFS. It’s believed that CFS can be triggered in people with a genetic predisposition for the disorder. Potential triggers for CFS include viral infections, hormonal imbalance, or immune system impairment. Symptoms and severity can vary over time.

The difficulty in differentiating between CFS and ME is summed up by the National Alliance for Myalgic Encephalomyelitis (NAME):

“The short answer is that in many cases (possibly most cases) ME and CFS are the same disease with different names. Often patients are incorrectly diagnosed, depending on the physician’s knowledge of the differing clinical definitions, and there are very few physicians that have the knowledge, or take the time, to differentiate the patient’s diagnosis.”

International CFS/ME Awareness Day is an excellent time to start a discussion about these two illnesses. More education, advocacy, and research could help determine if CFS and ME are different diseases or the same, as well as advance diagnostic procedures and treatments.

World Lupus Day was on May 10^th

Lupus is an autoimmune disease, meaning that a person’s immune system starts mistakenly attacking his or her own body. In a person with lupus, the body produces autoantibodies that attack the skin, joints, and organs. While fibromyalgia and CFS/ME are invisible illnesses, lupus can be very visible during flare-ups. It causes a very distinct butterfly-shaped rash across the cheeks.

The true danger of untreated lupus is the potential organ damage (and even failure) that it can cause. The heart, lungs, brain, and kidneys, in particular, are vulnerable to damage from untreated lupus. Additional potential symptoms include pain, swelling, fatigue, fevers, and confusion (“lupus fog”).

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Making your mark

Finding more effective treatments, better diagnostic methods, and, someday, cures for these diseases will take a group effort.

This is the basis of having observances for these diseases. By marking a particular day as a time to bring attention to these diseases, more people will become aware of the debilitating effects of fibromyalgia, CFS/ME, and lupus. This can also lead to better-educated physicians. These diseases all share some similar symptoms – pain, fatigue, and confusion – and diagnosing them can be difficult. If public awareness increases, perhaps physicians will also work to increase their own awareness, shortening the time it takes for individuals to reach a correct diagnosis.

Also, knowing you’re not alone goes a long way. The more people are aware of fibromyalgia, CFS/ME, and lupus, the more supportive the rest of the community will be of people with these diseases. Eventually, the stigmatized “all-in-your-head” perception of these diseases will begin to disappear.

Whether you have or know someone with one of these diseases, or whether you’re simply curious or want to help promote advocacy efforts, there are lots of ways for you to make a difference. A few of these include:

Print off materials, like a World Lupus Day flier, and ask permission to hang them up in your community.
Change your profile picture on social media to honor a disease’s day of observation, such as on Fibromyalgia Awareness Day.
Share facts, articles, and statistics on social media. A very simple way to do this is to follow organizations that focus on these diseases. When these organizations post something you find meaningful or helpful, share it with your own friends or followers to increase their understanding of these invisible illnesses.
If you live with fibromyalgia, CFS/ME, or lupus, let your friends, neighbors, or coworkers know. They’ll be more likely to go out of their way to support advocacy and research efforts if they know someone in their life has a particular disease.
If you have a friend or family member who’s living with one of these diseases, ask him or her if there are any popular misconceptions about that disease. Ask what you can do to alter these misconceptions or if there’s anything else you can do to help.
Consider making a donation to a reputable charity for one of these diseases. You can even earmark your donation for certain causes within the charity, such as funding research, surveys, or support groups. The National Fibromyalgia & Chronic Pain Association even released a list of achievements that came from its 2014 donations. Consider donating today on Fibromyalgia Awareness Day.