There is a lot of support for the various Awareness Days.
Mismatched sock day, Pink tee shirt day, Purple Day. Whole companies get involved with fundraising -- "hashtag day", restaurants donating so much per food item sold in support of various diseases.
Whole offices get involved, holding fundraising events and then posing beside large cheques or a painted thermometer on a wall showing amounts raised. Towns proclaim days or light up in the colours in representation. On social media, individuals share awareness memes, change their profile picture, "like" or "love" awareness posts.
Yet, when it comes to ME/CFS, the world pretty much goes silent. No corporate fundraising. Individuals do not change their profile pics, share awareness memes or even acknowledge awareness posts by leaving a comment or even clicking "like".
This silence is deafening while the apathy speaks volumes. The stigma attached to ME/CFS is huge and very isolating.
ME/CFS is not rare. There are more people living with ME than there are with MS, Alzheimer's, Parkinson's and Epilepsy COMBINED. These diseases are familiar names. However, mention ME/CFS and it's met with blank stares or comments such as "Ya, I get tired too" (which shows how little is understood and the huge need for awareness of what ME/CFS actually is.)
This is concerning, given the number of people with ME/CFS is on the rise, the cause is unknown, there is no cure, no treatment, no Drs. to treat it (and most Drs. are so unaware of it, they prescribe therapies which cause more, permanent harm), it's barely, if at all, taught in our medical schools, our Cdn. gov't spends nothing on research into it, there is a genetic component (meaning if it's in your family, there is a greater chance for other family members to get it).
ME is a spectrum disease with 25% being bed-bound or housebound and 75% being too ill to work or attend school. The fatigue experienced has been compared to what cancer patients go through while undergoing chemo, yet many with ME live like that for years or decades unable to get a diagnosis. Some countries remove children from their homes and put them in psychiatric hospitals, forcing them into the dangerous therapies which make them worse or even cause death.
This post is not seeking sympathy but rather to raise awareness of what ME actually is and how debilitating it can be. It is difficult to be this transparent and yet, when newly diagnosed people reach out because of something shared, it worthwhile
ME is not being lazy, just tired or un-motivated. It is not be cured simply by changing one's diet, getting some exercise, fresh air, a new hair do or pushing your way through. It's not "all in one's head, it's not a mental illness and sending patients down this road makes ME patients more ill while wasting valuable resources that could be better used by those who do have mental illness.
May is ME/CFS awareness month.
Balance....despite the chaos!