Fighting the Insensitivity of Others

Treatment #10
Of all the things we have to deal with internally fighting this hideous disease, to me, the things that we fight externally are sometimes more debilitating.

This week I came face to face with one of the biggest enemies to recovery, the ignorance and insensitivity of other people. In my case, this shocking reminder of just how alone I really am in this battle came in the form of reminders from the two groups in my life where I least expected it - the medical professionals treating me, and from certain family members who really do love me.

Let me dispatch both quickly, so that I don't re-attenuate my anger and dissapointment, and allow them to adversely affect my healing any more.

When it comes to family, (in this case some blood relatives who live a distance away and who communicate to me through text messages,) I forget that they just don't understand what I'm going through. Even though I've tried to explain it, and have asked them to read this blog along with the comments and struggles of others on blogs like this, they seem to think all I need is a pep talk.

There is a terrible story that has gone around for years where someone is trying to cheer up Mary Todd after the most horrendous thing happened in her life. A direct relative of hers told me this story so I feel at liberty to quote it here. The punch line was, as this "well meaning" yet ignorant person tried to console her, he said, "Well, apart from that, how did you like the play Mrs. Lincoln?"

Sometimes I think my relatives have about as much sense when it comes to this horrendous thing in my life.

I remember reading in a British publication a leading M.E. doctor saying "if my patient's families would understand that for most sufferers of M.E., both the symptoms and the reactions to the viruses raging in their bodies are worse than that which an AIDS patient experiences, they might get a clue." I hate to quote that statement to my family, although I believe it to be true, because I try not to freak them out.

On Ampligen, as others have documented, my symptoms get worse before I get better. So this past week has been extremely difficult, with extreme flu-like symptoms, body aches, emotional roller coasters, migraines, stomach turbulence, and more. I don't know about you, but when I feel like that, simple motivational phrases and "positive thinking" is not going to do it for me. It's like passing a soldier bleeding on the side of a bombed out building in Iraq and telling him to "Cheer up! Think positive! The Army loves you."

Then there are my Doctors here in the USA. This week I also discovered what I had been reading about for years, but by reason of living outside the states, hadn't experienced first hand - the overworked, under-staffed, barely competent office that is called a physician's "practice" or medical center here in this country. I won't use this space to express my amazement at the denegration of this industry. I'll just say to my fellow patients, in my view, you probably know more about this disease than they do. You probably are better suited to know what you need, through research and forums like this one, and listening to other patients, than you are trusting your physician to know what is best for you, and thinking he or she is "plugged in."

It may not be their faults, personally, but in my opinion, they have neither the time nor finances to invest in maintaining their "edge" against this disease. They are so strapped for time and resources that they do not have room for reading basic journal reviews, dialogueing with other physicians, or probing new solutions that other physicians are trying worldwide, They certainly don't spend any time doing the research that you and I do - and that to me is frightening.

I won't even go into the way the office is "run", the lack of administrative cohesion, or the abject lack of professionalism from some of the office staff because Doctors are forced to hire essentially minimum hourly wage workers "off the street." One nurse told me that she was never even interviewed by the nursing service in person! Ever! They hired her by paperwork only.

Other patients have warned me not to get distracted by these obvious problems, that really tend to scare you, so I try to just focus on my health, and just getting my Ampligen twice a week. But I will say, it still shocks me that no one in that office who swore the hippocratic oath, ever volunteers anything about my treatment, about what to expect, about the symptoms of my disease being attenuated by Ampligen and side effects I should anticipate.

It was through forums like this one and other patients that I found out I should probably try taking a saline infusion after the Ampligen. It was from another Doctor in town who has seen other Ampligen patients that I was told about getting magnesium in my saline, in order to help with the muscle pain. It was through another Doctor in L.A. that I learned that any immuno-modulator like Ampligen or Interferon messes with the serotonin in the brain.

When I experienced the depression trough that I posted about last week, and expressed that to my Doctor, his reaction was to take notes and say "mmm hmmm." No explantion, no recommendations, no comment whatsoever!

Thankfully, from another PhD friend on another M.E. forum, I had some explanation that made sense. This super guy told me:

"Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body's plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation."

And from Dantzer and Kelley, 2006:

Cytokines act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigueThe fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimers disease to strokeIndeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.

Thank God for the Internet, and online Forum friends like him, for helping me understand what was going on in my body! Or for at least giving me a clue.

Wouldn't it have been great for my Doctor to share a little tidbit like this with me? Forget the fact that he is my physician, wouldn't it be something a friend would want to share with me?

So last week was, in a sense, my "Ford's Theater Revelation." I now know that people are insensitive about me and my affliction. OK, I get it. I am here in this country for one thing, and one thing only- getting that amazing medicine called Ampligen in my veins twice a week. I am not expecting the physicians in the office to monitor me, inquire about me, or even care about my symptoms. I do not expect them to tell me in advance what I am about to experience, or offer counsel. I am thankful that my nurse, Gwen, is a sweetheart, and is a professional, and makes my treatments pleasant.

I know that Ampligen is working, and I thank God for Hemispherx and the fact that this medicine exists. That the FDA, the American medical system, the malpractice insurance rates, the inferior staffs, and the overworked, numb doctors and all the rest make the patient's journey such a challenge today, is a shame. That some of my closest relatives think that when I am down, sick and depressed because of chemicals raging, all I need is to read a motivational phrase from Dale Carnegie, is not ideal.

But now I know not to expect more from these folks. Like the guy in Ford's theater with Mary Todd, they haven't been through anything like this before, are at a loss for words, and really don't know what to say. I can accept that.

But excuse me if to either groups, I choose sometimes not to take your calls. You don't understand, and sometimes there is nothing I can say to make you understand.

Comments

We all understand exactly what you are saying and going through - I know, that doesn't help you feel better but at least you know you are so not alone in your illness. WE know how sick you are. That may help validate it for you should you need the occassional validation that you are indeed sick and not mentally ill. As someone noted here on the forum, sometimes we do need that validation in the face of the naysayers like Reeves, Wessely, the public and our own family. After 15 years of illness, my own family still does not understand what is wrong with me and have come up with some of the stupidiest ideas of why I am sick and how I should get better. My mother says I need to come off my meds - though she has NO idea what meds I am on. She also thinks my diet is poor so if I eat like she fed me as a child I would be cured. She really believes these statements and has never bothered to read even a paragraph on CFIDS. I gave up on my family years ago. Can't fight them since they just can't understand. My husband did not really understand how sick I was and how much it affected my ability to do anything - that changed when he got sick and he has apologized about a thousand times to me on his not understanding what I was going through. He did his best, was supportive and never took cheap shots at me but he didn't REALLY understand until HE got sick. Now the two of us together still don't even make 1/4th of a healthy person.

Thank you for posting the statements on Cytokines and the role they play in illness. I did not know any of this. It does make sense as it seems to be a way for the body to "survive" by taking it down and forcing rest. I think Dr. Cheney said something like this that CFIDS was the body's way of keeping it alive - something to that effect.

Thank you for the statements below. I can tell my poor husband this so he can understand why he feels so badly and has anxiety, etc. He has been sick for 5 years versus my 15 years of CFIDS and I have to tutor him on being sick and dealing with it. You just helped me be able to explain to him why he feels so badly and why he needs to stay on his meds and not try to come off of them too quickly. It also helped me understand why I continue to feel so badly. I knew that an Up regulated immune system made us feel so sick, like we had a dreadful virus times a million (and not the virus/infection itself), but I didn't know the whole rest of the story. Again, thank you.

"Thankfully, from another PhD friend on another M.E. forum, I had some explanation that made sense. This super guy told me:
"Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body's plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation."

And from Dantzer and Kelley, 2006:
Cytokines act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigueThe fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimers disease to strokeIndeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.

Praying your Amgpligen works for you and you return to good health. Hugs - M
 
You know, I feel so supported in my own view of US doctors. It's shocking, the kind of treatment you're getting, but I think it's only too normal. I don't actually patronize our medical system much, as I feel it's good only for emergencies; the US loves a crisis and we do well at them.

But of course friends and family are anxious that I should have medical care and not just diddle around with this alternative stuff. My family is great, they all really understand that I am sick. But they have a faith in the medical system I simply do not. You're vindicating my lack of faith with your out-of-country perspective.

One thing I wanted to mention is that on the active B12 protocol on this forum (the Hidden Story thread), I've been experiencing a worsening of symptoms also. I honestly don't know much about Ampligen or how it works, but in the case of B12s, the symptoms get worse because the B12s are finally kicking in methylation and things are moving for the first time in a long time. Freddd (whose protocol it is) describes it this way: for so long, there's been so little input, the output volume has been turned way up. When there's finally input, it's like having the volume too high on the amp, you get skreels that pierce your ears. The system has to readjust to having input, and that takes awhile.

With the B12s I have found that the symptoms that get worse are the ones that show improvement after the storm is over. I'd be interested to know if you can tell any signs of this in your treatment. The mechanisms of the two may be completely different, but at least in my case, getting worse is leading to getting better.
 
Some people will never understand. It doesn't matter what you do, they just plain won't. Alot of people have to experience something to believe it.

Doctors aren't trained to deal with us. And I've found that most don't have the time or the motivation to read up on it. They just don't care. And they feel that it can't be that serious if they haven't learned about it in med school.

The media is definitely to blame. Even the articles they do run, most of the time, they will take a very mild case of someone who was out of work for six months and is now back to work, even part time. So they make it look like this is a mild disease that you can get over. No one believes us when we try to tell them there's a whole segment of people with it who cannot just get over it and go back to work. The media never shows the severe cases.

I hope Ampligen continues to help you. And yes, it can make you feel awful at first. But at least you know it's working.
 
Kevin I too have dragged myself to doctors only to have the same awful experience as the last one. Insanity is doing the same thing over and over expecting a different result. So I have done something different. If I need a doctor for scripts or have caught yet another bug or have extra-florid symptoms I go but I don't expect any understanding about my CFS, No expectation no disappointment. If they have any knowledge and/or compassion well, that's just gravy!

Because I worked in the mental health field for so long I use medical lingo as soon as the doctor takes a breath. If s/he takes a breath. Usually the Doc listens to me or is offended that I might be telling s/he what to do. They write the script and I walk out with some dignity and peace intact. I have spent countless hours sitting in the local city hospital in pain, sick as a dog, or too sad to care. I turn to my spiritual beliefs, ask for the grace to get through, and focus, if I can, on those around me.

I too dislike the knee-jerk happy face advise or really any unasked for advice from the well meaning. I've found that I do not have to respond to it. I simply remain silent, look out the window, or practice remembering something I want to remember later. Oh yes, and if I feel like it, I might nod and give an ah-hum every now and again.

People have all kinds of reasons for their ignorance and their advice giving. I am usually too sick to play along or explain. Silence is my prerogative not rudeness. If I really do wish to respond I tell them that a simple, "I am so sorry that you're so sick" would be the loveliest thing that could give me.

Blessings for you and your treatments and may you gain greater strength and health. I hope that you continue to reach out to any/many of the millions of us. I am listening.
 
This was profound. Thank you for writing on this subject. I'll always be thinking about Mary Todd now. That was a perfect analogy. We're all in this together and feels better knowing that to me.

Hugs,
tee
 
Great Blog, Kelvin,

I think that's why so many sufferers of invisible chronic illness of the nature of ME/CFS/FM withdraw from society.

The lack of understanding brings us down in a very negative way & is detrimental to our mental well being.

This is why we join forums & "talk" on the internet. Here we have a voice, we find kindred spirits & ultimately we can go about research & finding our own treatment.

I am so thankful for an understanding & sympathetic GP. Mine is the best listener I know & respects my views & follows through when I ask for referral or tests. He also appreciates my limited finances.

If there's one thing I wish for all sufferers, it's to find a compassionate, sensitive GP to be your friend, doctor & supporter.

My elderly parents do not understand my FM, but they do help me out, because they have pain & fatigue, heart problems & high BP. So while they are in their mid 80's, we are one in our symptoms.
 
Hi Kevin,

I am sorry that your doctor has been less than sensitive to you, your health and your symptoms. I personally feel most doctors should not be doctors unless they have compassion which usually comes in the form of a loved one being very ill, and the doctor learning and doing EVERYTHING in their power to help figure out the illness. Doctors should always disclose the anticipated side effects of the drugs they are giving, especially since you didn't get a write up from Walgreen Drug store attached to your Ampligen bottle/IV. My heart goes out to you.
 
Great blog, Kelvin. Seems like every week is a new adventure. You're really a good writer! You do a great job of capturing your experiences with words. And wow, your experience of the medical system - so right on! It really does leave you a bit agast doesn't it!
You're so right about the family stuff. How can they understand? They simply cannot and that's the way it is.
My primary care physician has a pretty large practice. She has 3 CFS patients. So is she going to spend time learning about it? Of course not. She has to budget time and priorities like the rest of us.
Such is life in the CFS lane.
 
Thank you Kevin for sharing your story and tell it like it is.

i am a registered nurse, so I know the (canadian) health care system. The nurses are pushed to their limits all the time. It works on guilt (you work 16 hours because you can't leave your co-workers short one staff member in the evening.) It works on overtime. It works on sucking up all the energy of their nurses, and if they have more budget for the hospital, likely it will be spent on more administration than front line nurses. As nurses we have been trained to "give it all" to the patient. But sometimes, it's just not good enough and sometimes the managerial staff tells you it's not good enough. You realize that you can't save the whole world, even though you'd want to. And you realize that your personal life, your family, your health has to come first, because that's what create balanced human beings. Isn't it ironic that Florence Nightingale, our professional role model got sick and had to stop caring, very possibly due to ME?

Interestingly I worked the last few years of my career in outpatient chemotherapy in a cancer clinic. The services to the patients range from volunteer drivers to beauty consultants for women losing their hair to meditation and support groups to art therapy. It has to do with funding, and with where people donate their money. Cancer is one of these diseases that people want a cure for. So I'd guess we didn't pick the right disease, since there is a handful of specialists that understand our disease for hundreds of thousands of patients, the majority of whom can't afford the care or don't have access to the care.

It occurs to me that we have the most insulting disease ever. Shame on the CDC, governments and psychiatrists.
 

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