The treatment received by the ME/CFS community from a vast majority of doctors, specialists, governments and the media, is nothing less than appalling.
Similar stories emerge from person after person, after visiting a doctor or specialist. Belittlement, embarrassment, disbelief, disrespect, refusal to listen or desire to even learn - the list goes on and on. This feels nothing less than heartless, cruel and uncaring. It's difficult enough being so sick and just maneuvering through the daily challenges this brings ( just getting to the doctor's office is a HUGE challenge alone), but to have to face this on top of it all, is crippling.
Then, as if that's not enough, the media picks up where the medical community leaves off by reporting wrong information. Governments won't fund research on it or recognize it for being as debilitating as it is.
Why do these communities continue to do this? Why will the medical community not help those who are ill by working with them and learning what this disease really is rather than what they think it is? Why do they continually push things that will actually make them more ill? Why is there not more education for them on this? Is this too much to expect from those who make their life working healing those who are sick?
Why does the media not want to get to the bottom of it all and come out with the REAL story? In this era of rampant fake news accusations, do they not want to prove these wrong by researching then reporting the facts? Doesn't it make sense for news establishments to work even harder to get the real story?
The info is out there and available, the ME/CFS community are more than ready to work with these establishments, so why do they continually refuse to learn or even look at it?
On a personal note, I am terrified to go to a doctor. Recently, I did go to one, the first in about 10 years, but am unsure if I will continue with him.
Why, you ask?
Because his 'care', his tests, his 'facts' (and I use this word loosely...they were facts to him, but in actual truth, they were things which will make me considerably more ill, things I may not ever recover from) which he advised. When I heard the things which came out of his mouth, things I know will make me more ill, it terrified me. Now to be clear here, we're not talking things I merely don't want to do or things I don't think will work. No. These are things I know will make me worse.
How do I know this beyond a shadow of a doubt?
Simply put, they are things in which I have first-hand experience with and knowledge of. They are things other doctors advised me to do which I blindly and dutifully followed because I trusted them. I believed they knew what to do and trusted they had my best interest in mind.
Unfortunately, they did not know and these things caused me to become bedridden, barely able to move. Worst of all, they caused a further permanent decline to my health. It was then I learned many doctors advise this and it has the same detrimental effects on everyone else as well. Even though this happens to so many, doctor after doctor, specialist after specialist, news article after news article continues to spew this stuff.
I shouldn't fear the very folks who are there to heal me, to help me get better. I shouldn't fear they're going to make me more ill. They should be a sense of comfort and I should be able to go to them for help in actually getting better.
Did I mention I am terrified to go to a Dr.?
I should be able to seek medical attention, without the fear of being made worse. I struggle with this because while I know I should keep up on things, is it worth the risk of losing the little bit of health I do have? It's a difficult place to be in, but after hours of weighing everything out, I feel keeping the little bit of health I have is worth more than the risk of losing it all. When I first became ill with ME/CFS, I was very ill. I've worked very hard to manage my symptoms and make some improvements. It's been an uphill battle all the way and the stakes are far too high. I've been there and done that and have no interest of going down (or is it up?) that road again. For now, I feel I have no other choice but to continue to learn about my condition on my own and treat myself. At least I listen to me!!
As bad as this is, it gets worse. Many times we're told, it's all in our heads and that we need to see a psychiatrist. Do we send diabetics, cancer patients, HIV patients or any people with other such illnesses to see a psychiatrist? Of course not and sending a person with ME/CFS to a psychiatrist amounts to sending a person with a broken leg to a cardiologist, a person with appendicitis to a dentist....you get the drift. This would be wasting both the patient and the professional's time.
As if fighting our illness every single day is not already enough, we have to fight with pretty much every single professional we come into contact with. Fight for the small stuff, fight for the large stuff and fight for everything in between. It's an up hill battle all the way, every single day, on every single front.
Our message to the medical community is clear and not all that difficult to comprehend. We want this mis-information and wrong directions to stop and stop immediately. We want to work with you (really, we do!), we want to get better (believe it or not...we do not enjoy being so sick!) Many of us have lived with this debilitating illness for a LONG time - day in, day out for years! We know our symptoms! It is NOT in our heads!
Who among you will help?
Who will be the first to step out from the crowd and up to the plate?
ME/CFS deserves the same respect other illnesses receive. It's time for this nonsense to stop.
Fighting onward for
Balance.....Despite the Chaos!