Anger as soon as fed is dead-
’tis starving makes it fat.
~ Emily Dickinson
I’ve done a lot of thinking about anger since my post written during the weekend ILADS was holding its conference. In particular, the difference between constructive and destructive anger keeps coming up for me. I received my first hate mail after that post, in addition to many letters of agreement. The thrust of the anger directed at me had to do with my criticizing doctors who validate the illness and offer up a hope for cure. In contrast, anger in the CFS community is seen currently as a positive force for change, as it was in the days of HIV. CFS patients are more jaded due to having had a syndrome without a known etiology for years or decades, thus precluding meaningful treatment.
For me, for many of us, it will be a race to the finish to deal with all of the anger and loss. In the Lyme community they call it Lyme rage, though anger is only one of the emotions that lives closer to the surface than it used to. Anger is one of the most difficult feelings to receive constructively. It shuts people down. It is often better in terms of outcome to let it pass through without action. But anger fuels the flames of political change also. Another lesson of HIV. The trick is to turn the anger into constructive action, rather than letting it fester or become vengeful. Properly channeled, it has the potential to be redemptive, rather than destructive to the person experiencing it and those closest to them. For the sake of personal emotional and physiological health, it is essential to forgive those who deserve to be forgiven and release thoughts of those who don’t, in favor of specific constructive action. A willingness to reconsider the mistakes of the past in light of new information is a trait that makes someone worthy of forgiveness.
>What I am experiencing goes beyond rage; it is outrage. My government used tax money to hide this illness and deprive me of treatment, keeping me ill for 24 years and stealing my life. Now they are trying for more years.
I am outraged!
Patricia Carter
>My late dear composer friend George Rochberg always spoke of anger as a very necessary and positive force – a kind of fuel – provided that it is used in the right way. More recently we have been taught to repress anger rather than channel it. I too think of anger as a fuel, and use it accordingly.
Chris
cfspatientadvocate.blotspot.com
>Anger morphs over time. It boils and bubbles, becomes red hot and burns the carrier. It distills, refines, and becomes a blinding white light. And then it cools and solidifies.
As it cools, it gels. It sets into a solid mass. It becomes cold, and emotions detach.
Forgiveness is for the carrier, not for the object of the anger. Forgiveness allows one to move forward and let go. A nice Buddhist concept, a Christian motto, a pscyhological balm.
But do we forgive Mengele? Hitler? When the atrocities are an affront to humanity as a whole, should we forgive and forget?
I don't think so. I won't forget, or forgive, what has been done to a huge population…what's still being done. My anger is ice cold. I feel no forgiveness, no mercy. Only pursuit of justice.
>Justice. Sometimes I dare to dream of justice.
(ME/CFS since 1978 and angry about it since 1979)
>I can relate to your anger way to well. My anger is divided in little pieces of shrapnell, targeting the government, the medical insurrance company, some physicians who want to make money out of us, other physicians who seem to ignore us, fellow sufferers who hold on to their strong believes and loosing focus simultaneously… we are in it all together. I hope we can manage it throuhg this rough time without hurting one another.
>"For the sake of personal emotional and physiological health, it is essential to forgive those who deserve to be forgiven and release thoughts of those who don't, in favor of specific constructive action. A willingness to reconsider the mistakes of the past in light of new information is a trait that makes someone worthy of forgiveness."
Just about everybody in the world has made mistakes in the past, with regard to overlooking or minimizing this illness. Even within our own community, even by the people who from the very beginning have been our biggest champions, mistakes have been made.
The work of the WPI has given our disease legitimacy — and thus the opportunity to bring in new people who have the potential of helping us. The fact that they have not helped in the past does not mean that we should not solicit and be grateful for their help now.
We need all the help we can get.
There are some villains in this debacle, no doubt. We need to make sure that those who would actively suppress or minimize this illness are not allowed to do so any more.
But to let the opportunities that we have now go to waste while we focus our attention on those who have suppressed this illness would be letting them win.
Thank you for this post.
>Years ago, I learned of some interesting research done by the HeartMath Institute. They measured salivary IgA pretest, then had subjects think about something that made them angry, re-measuring IgA every hour for 6 hours. At hour one, IgA was increased, during every subsequent hourly measurement, IgA went below the pretest measurement. Angry thought depressed salivary IgA for 6 hours!!!
They repeated the experiment on a different day with subjects instructed to think about something positive for 5 minutes with salivary IgA dipping on the first hourly measurement, then going above baseline, and staying above baseline, for 6 hours.
Once I learned that I gave up staying angry when someone cut me off in traffic. Of course, I can't control the automatic reaction one has when one is threatened by another's aggression. The question I developed to ask myself: "Is it worth six hours of my immune function?"
The answer was invariably "No" and that was before I entered the world of ME/CFS. Now my immune function is more dear than ever, I need to support it any way that I can. For me, that means feeling/recognizing the anger. For any of us with ME/CFS we'd be certifiably psychotic in terms of being out of touch with reality if we weren't angry at what has happened to us and the colossal indifference and disrespect with which we have been/continue to be treated.
As soon as possible, I endeavor to find the forgiveness that will enable me to support my immune system and immediate sense of well-being, right now.
I fully acknowledge my experience with ME/CFS has been very, very short compared to many others, measured in months, not decades. For the moment, while still effectively housebound most days, I find I can dissolve my anger in the wash of compassion I feel when I read the bios of my com padres in ME/CFS.
I also endeavor not to take the ignorance, malevolence , and indifference of others, including my adult sons who really don't get how ill I am, personally. My sons are electrician/lawyer busy with a young familys and night school. If physicians don't get it, why would lawyers/electricians? Being angry/fighting with them will not help me heal.
With regard to Unum and my disability payments, it isn't personally directed at me; it's just the way they operate. I will stand by my determination to get the money I'm due, but feel much more powerful when I'm operating out of respect for me, than anger at them.
I'm not advocating stuffing/denying my anger bu tmore recognizing it, feeling it, expressing it, then moving to a more useful emotion — for me.
I had no idea this was going to be such a long post when I started. As always, thank you Jamie for the work/mission you have shouldered. Love and compassion to us al.
>I have found that forgiveness is not something someone deserves. It is for my benefit! If I stay angry then my focus tends to be on the one that made me angry. Who does that hurt? Not them! They have no clue. But that resentment and anger certainly hurts me.
Does that mean I forget? Heck no!! They are two different issues. If I forget then I am a sucker for it to happen again. I learn from it, but forgive. Release them. Not for them, but for me!
Meanwhile, I do agree that anger can help motivate. But if it involves writing something, I write it about 6 times before it is presentable for public viewing.
Now, if I could just curtail my tongue when it comes to insurance companies….
Thanks for this blog!
-Karen
>Dr. Jones
Have you considered the fat redistribution that the ativirals cause?
Do you notice it happening to you?
Particularly the loss of facial fat?
I am xmrv+ I just found out and wanted to start the antivirals that you are on but am afraid.
I have been sick for 24 years. I have been bed ridden for about 22 years.
Can you please comment on this.
Thank you
Pinky