If there is a medical condition or debilitating illness that you are ever going to be discriminated against, ostracized, judged, looked down upon, criticized, condemned, and maybe even fired from your job for having, it surely will not be AIDS, Cancer, Diabetes, Heart Disease, Asthma, Lupus, MS, Colitis, or any of the other well-known autoimmune or debilitating diseases.
Because they are widely known and recognized, advocated for, highly researched and funded, and mostly because there are laws in place to protect certain individuals from having their condition or illness used against them in the workplace, in the community &/or medical field.
But, not all diseases are created equal
Being diagnosed with the unfamiliar, most often misunderstood condition known as ME/CFS, those behaviors and views mentioned above are continuing to happen on a daily basis to sufferers all over the world, and very little is being done to change or stop it.
Literally Millions of ME/CFS suffers are inevitably forced into hiding, not by choice, but because our condition and symptoms push us and keep us confined to our homes and beds. Ultimately removing not only our bodies from the rest of society, but our voices have also become silenced, as we become consumed and focused on our own health and well-being. While the rest of the world continues on with life and living, completely oblivious to the fact that millions of us are suffering alone and in silence. The recently released film, Unrest takes you behind closed doors, into the homes and lives of a few of those suffering with severe ME/CFS.
A great majority of us go untreated due to lack of medical insurance and funds needed to receive proper treatments, transportation and mobility issues, or worse…the lack of medical professionals who are educated and trained enough to recognize, diagnose and treat patients with ME/CFS.
As though all of that were not enough
The stigma attached to this condition is another major factor why so many suffer in silence. The fact that many are clueless and ignorant of what this condition really is shows every time they open their mouth to give advice or suggestions based on their very limited or complete lack of knowledge and understanding of our condition.
Who would dare tell a Leukemia or Cancer patient undergoing Chemo, to just go outside for a jog every day and they will see a significant improvement in their condition? That they just need to get out more and exercise instead of staying cooped up in the house or bed all day every day.
Who would actually assume it to be okay to tell an Asthma patient that it is ridiculous to avoid certain people, places, or things simply because they ‘may’ get triggered and thrown into an attack?
For an ME/CFS sufferer, triggers can set them back for days, weeks, months, even years.
Who would have the nerve to tell a Diabetic patient, who uses a wheelchair for better mobility that if they just stop focusing on what they can no longer do and start focusing on what they can still do, it is only a matter of time before they will no longer need that wheelchair to get around?
These and many more well-meaning, yet ignorant statements are repeatedly told to ME/CFS patients each and every day, by not only family, friends, and co-workers, but for some, they hear these things from their own doctors and caregivers.
We are already fighting against so many other obstacles within our own bodies and minds, why are we repeatedly forced to defend our condition and long lists of symptoms when those with other conditions/diseases don’t have to?
So what if I ‘look’ fine and healthy every time you see me, or if I was able to get out of the house to go grocery shopping yesterday, but today I am stuck in bed, in excruciating pain.
So what if I am a college graduate, yet have to be repeatedly reminded of simple things that I should be able to remember.
Sometimes I don’t even know or understand all of the components associated with my condition and symptoms, that doesn’t mean I am faking, or am a hypochondriac. No, I don’t have a mental condition, it’s not all in my head, nor am I cursed or my body being controlled by some demonic force that just needs to be expelled so I can be made well again.
Can you imagine telling a heart patient with a pacemaker that they obviously ventured too far off into dark side and just need to rebuke the evil spirits from their body so their heart condition could improve?!?! Absolutely absurd isn’t it. I had an employer tell me something quite similar once, then terminated my employment.
Knowledge and Information about ME/CFS is readily available, from so many credible sources, as with any other debilitating disease, and is constantly growing as time and research progresses and moves forward, and as we get closer to finding a cure and better treatments.
I am 1 of those 20,000,000
To learn more about ME/CFS and how to become a Voice for the Millions Missing, please click on the links throughout this post, as each “ME/CFS” is embedded with a different link that will take you to a different website.