Just a quick entry because I’ve been very sick. I got an email this morning that, once again, showed how little understood ME is. I had written to a neighbor who actually seems to know ME more than the average person that I had gone on a three-day trip to Germany to see my Dad who has been having very severe health issues for six months now. According to several physicians here in the US, he is most likely dying of cancer. I only went for three days because I can’t stay off Ampligen longer and because I cannot travel by myself and we don’t want to leave Aimee with the nanny longer than that. Obviously, I much too sick to travel that far with Aimee, something that most people won’t understand. So, just take my word for it.
My neighbor said in her email, “Wow Jeannette – Germany for three days? That would kill me and I can’t imagine how tired you will be.” The thing is that she really was empathetic, but her words so rubbed me the wrong way and every ME patient and carer will know why. Everybody else won’t.
Here is my shot-from-the-hip reply: “Tired would be ok. I can deal with tired. This is where the slave name [chronic fatigue syndrome] comes into play. All patients would be ecstatic if we were merely tired. If it wasn’t so serious, it would be funny. We are as sick as cancer patients on chemo or as late-stage AIDS patients. Yet, everybody thinks we are just tired. The CDC propaganda is still working like a charm. It’s frustrating beyond words. And isolating.”
I immediately felt guilty for having said what I did. Because that neighbor of ours really is a very nice and understanding person. And she meant no harm by what she said. But it’s not normal and it’s extremely emotionally damaging to have one’s challenging reality denied and downplayed every step of the way. The human psyche is not made to experience and tolerate that day in and day out without having a reaction to it.
I discussed my frustration with friends on Facebook (while lying flat on my back). And one of my FB friends said that her Mom, who has ME as well, got this incredible response from the boss of a nursing home the other day: “I have that too. That’s no excuse.” No genuine ME patient would be able to run a nursing home. That sad excuse for a human being confused his being tired from having a demanding job with an extremely debilitating neuro-immune disease.
You know what folks? People need to learn that their words have consequences! Comments like that are the talk of bullies. And ME patients are subjected to bullying every day. It is so extremely emotionally damaging on top of the physical suffering. And I am completely over it. I believe that patients have a responsibility to speak up when others make incorrect statements about our illness. If they are well enough to fight the battle, that is. I realize many are not. And right now, I barely am and I have the benefit of the amazing drug, Ampligen! But think about it: The more of us who stay in the closet by not speaking up, the more we enable the bullies. (Just to clarify, I don’t consider my neighbor a bully at all. She was just the inspiration for this blog post.)
Back to my Dad because I want to avoid the impression that I am able to jet set like a healthy person. I am not, but we are dealing with extreme circumstances here. I said he is most likely dying of cancer because his physicians in Germany have, so far, refused to diagnose him. He is fully insured, so that’s not the issue. Instead, the doctors labeled him depressed right away without performing any exams to rule out organic illnesses—most notably cancer, which is very likely given his symptoms—and despite the facts that my Dad, at age 72, has no history of mental-health issues, that there has been no triggering event for depression and that his affect has absolutely not changed. I know depressed and he is not depressed, despite his extremely poor health. Nevertheless, his doctors immediately put him into psychiatric units of hospitals and shoved antidepressants down his throat without his knowledge and, thus, without his consent. He had trusted them and besides, patients asking what drugs are given to them is frowned upon in German hospitals. The patient is just supposed to take what he or she is given and not ask questions. For weeks, my parents were unaware that my Dad was given antidepressants. The drugs made him sicker. The doctors also refused, while in the hospital, to treat the side effects caused by the drugs. He could have gone into renal failure. Luckily, he didn’t. He went straight to the ER of another hospital when he got released where some of the side effects were addressed.
The psychiatrists never even took his blood pressure. Not once in months! At some point, my Mom checked my Dad’s blood pressure and it was 78/48, which was caused by the meds, as we found out when we researched them. My Dad ordinarily has high blood pressure and is on blood pressure meds. Those together with the psychotropic meds he was given lead to a plummeting blood pressure. The psychiatrists’ treatment “plan” was to keep him on antidepressants for months to see if that would alleviate his symptoms. For months! Without ruling out any physical illnesses. My pointing out that any potential cancer might be untreatable by then triggered the reply that the doctor would refuse to ever treat my Dad again (except in an emergency when her ego would be overwritten by the law) if I sent one more email.
In another hospital, the treating doctor refused to give him his thyroid meds after I had diagnosed him with an overactive thyroid by looking at his labs and the clinical picture. I am no physician, but the thyroid issue jumped off the page. Yet, six (!) physicians had overlooked it, refused to test further for or treat it when I begged them to and, to this day, refuse to accept the official confirming diagnosis of the experienced endocrinologist I sent my Dad to who had prescribed thyroid meds to treat the overactive thyroid. The good doctor at the hospital completely blew a gasket when he heard that my Dad had seen an endocrinologist in between hospital stays. In perfect Soup Nazi fashion, he basically yelled at my Dad “No thyroid meds for you!” During that week-long hospital stay, my Dad’s TSH tanked further from 0.07 to 0.03. The normal range is 0.27-4.2.
After I pleaded with his doctors for months to order diagnostic tests for cancer, without much success, we finally were able to convince a new GP to order an abdominal CT scan. After six months! There is a whole lot more to the story. And it’s almost all very disturbing. Parents die—in a car accident, of a terminal illness, etc. But to see my Dad in complete agony every minute of the day because of medical arrogance, incompetence and very fragile egos without any palliative care, that really is more than I can tolerate. My Dad is a very gentle and kind man. He has never hurt a soul. He has been abused, ridiculed and completely dismissed by the medical community in his home town. And now he is probably dying because of it. I was hoping he is out of it enough to not understand that his suffering is needless. But my visit confirmed my fear: He is fully aware of the fact that he is suffering because of physicians who view their Hippocratic Oath merely as a formality.
I will be writing more about this in the future. This ordeal has really opened my eyes to the German culture where blindly following authority at any cost is still very much part of daily living for far too many Germans—despite the horror that happened under Hitler and despite the suffering under the communist East German regime—and the fact that everything that is wrong with the medical system in the US is ten times worse in Germany, maybe just East Germany, maybe all over Europe. I don’t know. Many German doctors are just another type of bully. And they find nothing wrong with it. To the contrary, they take pleasure in it.