I have just finished six weeks of radiation therapy for my esophageal cancer. This treatment caused severe burning of my esophagus and stomach, leading to pain 24-7. My escapes from the pain have been narcotics and dissociation, (picturing my body as a separate entity, so that I can distance myself from the pain - a nice break). My meditation practice has been extraordinarily useful. I have also used an interesting technology for pain and anxiety management called The New Reality, Personal Achievement Device wich uses a combination of audio and visual stimulus to relive pain and control anxiety.
This process has been an interesting lesson, not about pain management, but about how pain affects your life and psyche. After my cancer diagnosis, my life became "about me" in a positive way. Everyday I would receive cards, sweet emails, and hugs. Everyday, I would take care of myself with meditation, exercise, and various therapies. However, I was still able to empathize with others, and "see outside of myself," mostly because I was feeling OK.
Suffering daily pain has been a game changer. Each moment, I am drawn from whatever I am focusing on (a task, a relationship or conversation) to my bodily discomfort. Burning and cramping interrupts every conversation. Every activity becomes a struggle. Every moment becomes about me. I no longer find it easy to "see outside of myself" and the world inside my thoughts. My empathy for others has faded; my ability to relate has suffered.
As a physician, we are often confronted with chronic pain patients. They are difficult for us to deal with, as we are often powerless to make their symptoms better. This is highly frustrating to people who are driven to see positive results. More than that, it is a challenge to help them to step outside of their world-view (or personal view) that they are wrapped up in, and even invested in. After six weeks of pain, I am just beginning to understand this.
When your body screams at you every few minutes, it is hard to be a social animal. It is hard to listen to others as you are constantly being distracted. And, most importantly, it is hard to empathize when your suffering is loud. It's easy to say, "Oh Lee, you have cancer. That's okay." But is it okay? I have to say; it doesn't feel okay in that I enjoy being with and connecting with others. I enjoy good times and laughs, and I enjoy being there for friends in need. I miss this. My only consolation is that my pain is likely to be short lived, and it is predictable that I will feel well again in the next few weeks. The chronic pain patient doesn't have the blessing of a "light" at the end of the tunnel.
We usually think of the narcissist as one who is so in love with themselves that they can't see, connect or experience others. Isn't the pain patient a narcissist of sorts? Their acute attention to internal noise is a form of narcissism, taking them away from relationships with others and decreasing their ability to see outside of themselves. They are not occupied with their 'positive attributes.' They are occupied with pain and the inner world that this creates.
Empathy connects us to the world, and for physicians, to our life purpose. Without empathy, we fatigue, we disconnect, and we feel worthless. Can we help our patients and ourselves with chronic illness or pain, by seeing them as situational narcissists, and use psychotherapeutic interventions to re-engage them with others and with life? This would be healthier than just writing them off as crazy or unable to have a life.
Maybe when we see a chronic pain patient, we can ask about relationships. Are they getting out with friends, is there love in their lives? If not, maybe we should seek group support environments where they can learn to re-connect with others, and/or psychotherapy, not because they are "nuts," but because they may be missing out on what gives most of us meaning in life: social connection and love.
Another approach, in addition, would be to teach the person with chronic pain how to meditate. Meditation has been shown in multiple studies to decrease a patients' reactivity to pain, especially chronic pain, but also enhances empathy and a sense of inter-human connection. It is also a pro-active positive approach, which can give them a sense of mastery over time and allow them to mastery other skills. There are plenty of good meditation CDs available (I am a fan of Jin Kabat-Zinn's CDs and Martin Rossman's CDs) so this can be a cheap and easy, study at home process.
If my six weeks of pain is enough to create this self-absorbed being I can only imagine what a year or more of pain can do to one's life!
Delia Lloyd: 5 Reasons Not To Ignore Pain
Dr. Cheryl Pappas: Putting Up A Pretty Fence
Thank you for your article.
I don't complain but my social life has suffered. My friends ask why I don't come over more often. After working 8-9 hours at dayI, have to go home and do my exercises, take medication and rest. I really cannot work and socialize. I have doubts about finding a boyfriend who will understand because I don't look sick and don't complain.
But, all in all, I'm happy to be as physicall well as I can be. My friends do understand but I really think that because I don't complain I am not getting any sympathy - any advice on this ?
I felt so sad to read about your struggle with chronic pain--something I share. I have received an enormous amount of help from my fibromyalgia support group--not only is it great to get together once a month with people who truly understand my pain and my struggle to stay healthy, but I've made several true friends of the heart. It's terrific to have friends who truly understand when I have to cancel out on a date.
I do still struggle to balance taking care of myself, especially getting the rest and daily exercise I need, with making social connections. As a good friend of mine says, having fibromyalgia is pretty much a full time job in and of itself!
hang in there
Donna
I have bad days like anyone that sometimes are very hard to get through. Three of many times I've been hospitalized I almost died. Once I stopped breathing & if it hadn't happened in the ER, I wouldn't have made it. All that just made me so thankful to have more time.
All those years I survived by being a true optimist but for about 12 years I allowed too many meds be prescribed which ruined my stomach even more than problems I began with had. That mistake may well shorten my years. I wish I'd known the dangers of long term medication & it's too late for me but I can tell others to be very careful. I know meds, including anti-depressants, can be life saving for some people but short term is the key!
As years went by, my optimism wasn't such an easy target to attain as my conditions multiplied & pain & suffering increased. I've always been an activist & all the innocents suffering & dying in the Iraq occupation hurt me much more than my own physical pain. I would get busy being an activist & any pain would be put easily on the back burner, replaced by concern for the victims & anger for the people causing it. I have cried rivers for children in caught in the middle of perpetual war & hope before I die, I get to see America wise up & begin to right many wrongs.
It also cures cancer. And Crohn's disease and MS and arthritis. The clinical trial at Penn State for Crohn's was so good it is being replicated for children and funded by NIH.
Of course, no one believes me as I write this. But wait! Here is why it works on so many illneses: it increases endorphins and a certain amount of endorphins are needed by the immune system to work correctly. This is a whole new area of research: endorphin deficiency states and the immune system
The cancer stories are extraordinary. Science and MD's are behind this, this isn't a scam. You can read about it here: http://www.mbschachter.com/protocol_for_low.htm and here:
http://lowdosenaltrexone.org/
Imagine arthritis, MS, lupus, etc..all gone..check it out!
I spent every free moment researching. I tried so very many things, but nothing worked. I had to lie down often because of the pain- that kid saw me lie down in zoos, on park benches, bleachers - anywhere I could. Only lying down was I free from pain. The moment I got up the neck pain returned. I could not turn my neck. The muscles were bands of steel - tonic was the word the doctors used. Massage therapists refused to work on me. Physical therapists said they had never seen anything like it.
I never, ever gave up. I never complained either. I explained to a few what I was going through, but never did the pity party.
Finally, reading an endocrinology book at Stanford gave me the answer. I diagnosed the cause of the rigid muscles and it is over. . No, pain does not make one a narcissist. I am a born optimist and that helped. Every problem has a solution, we just may not
What actions/words did you appreciate from your friends?
My friend has been sick for maybe 5 or 6 years now. As we are all in our mid twenties, she is the first of us to be seriously sick. So this is a learning experience for everyone. And yet, no matter what we do, we are not being good friends to her. If we send cards and flowers, we are not good friends because we don't call. If we call, she does not answer. We get long emails listing why we are not being good friends to her and yet even if we change our behavior, it is still not good enough.
She does know seem to know what she wants from us and blames us for not giving her what she needs, even though she herself does not know and changes her mind daily. So I'm asking those of you out there for help and guidance...how did your friends maintain relationships with you?
I lost a lot of friends when I first became ill with fibromyalgia--looking back, it was 75% my fault--I was in mourning for the life I'd lost (I had to stop working ) and desperately searching for medical help, unsuccessfully, and horribly, helplessly jealous of my friends who still had a normal life. I was also ashamed at what I perceived as my "failure"--to keep working, to find a cure, to "get over it."
Frankly, the people I stayed friends with from "before" were the ones who hung in there with me, as you seem to be with your friend, even when I was a real pain in the butt--eventually I figured out how to deal with my illness and was so grateful for the people who hadn't given up on me! These were all people who were willing to listen to me talk about my illness--a real comfort, since most of the world does NOT want to hear about it! The best thing I did for myself was to join a support group--I hope your friend has done this.
Your friends emails sound pretty unfair to me. I suspect she feels that it's unfair that she's sick and her life is so hard. It is unfair, of course, but that's life! And it's certainly not your fault. So I'd just like to say, thanks for hanging in there with her! You sound like a wonderful friend.
Donna
Physician, you are almost there...
My favorite......
Until the well become unwell, we, the few who already have (and have learned about wellness) will “cowboy up” as we get bucked off again and again. If only the “well” seemed interested?
have had chronic back pain for close to 6 years now.When I went to the doctor at first;she wanted to know if I had taken a fall and was in crash;I said no;she immediately sent me to NWMH for a brain scan.
I told her I was not crazy and making this up but still went and came back with a clean brain scan. I went to another doctor who wanted xrays;MRI's and a cat scan and everything came back negative until last year until they found out that I not only had arthritis in my back but that I needed a microdisectomy on my L3-4 and that I might need a different procedure for my L5
they are now talking about pinched nerve in my neck since I've had horrible neck pain for a year now
In the meantime I have been extra careful about not doing a darn thing for people unless I have to such as bending down etc and make no excuses for it
I have been in excruciating pain for close to 6 years now;folks looked at me as if I was losing it;even my own mother.
I am waiting for a Cspine MRI and waiting to see a neurologist to figure what to with my neck if I do have a pinched nerve
I've come to the point were I'm hoping for surgery on my back and neck
don't feel guilty about supposedly turning into a "narcissist"
Not at all. The fable, and root for the word which describes the self-absorbed, is of Narcissus who was so beautiful that he was incapacitated from doing anything other than gazing upon the reflection of his beauty.
This doesn't describe at all my decades old experience.
First of all---I no longer have medical insurance which might provide a physician nor prescription medication or a referral to some "group" interaction.
Secondly, although Michigan recently passed medical marijuana----yes! say it!----I couldn't afford the fees demanded by Lansing for the "get-out-of-jail-free" card. Also, there are no physicians in this geography willing to jeopardize their medical license under threat by DEA.
While I sympathize with the MD who had pain medication & the understanding "that this, too, shall pass," even after this experience I doubt he could relate to me if I presented myself for a medical consultation. And, I'm no narcissist.
Pain prolonged lowers the threshold of pain.
At this point, I am only left wondering what my severe, unspeakable, unrelenting pain does for me or anyone else. And, I wonder how the eventuality of sucking the barrel of a gun will be my fate.
After all, most people who owned a pet in misery would have that pet painlessly euthanized. Why am I considered less?
Oh, wait. Maybe I am a narcissist, but who give a ......... care?
I gave him an ultimatum about finding some kind of effective pain control. The best our doctor could offer was narcotics (percocet, etc.) which knocked out the pain but made my husband horribly nauseous and anxious, insomnia etc.. As a last resort he obtained a prescription for medical marijuana, after talking to several people we knew who used it to manage pain from degenerative diseases and serious injuries (car, sports accidents).
Thank heavens, it worked. He is able to manage the pain with mmj and regular bodywork and exercise. His personality has become the sweet man I fell in love with again. The mmj has no unpleasant side effects and can be taken in small enough doses to give analgesic relief but no "high" or impairment of daily life functioning. It has been nothing short of a miracle and I am so grateful we live in a state where this option has been available to us.
I read your blog this morning and felt much gratitude for an update on your progress. As in the past, your writings have resonated with me in a very personal way. I have been struggling with an auto-immune condition (PMR) for the last 14 months. The pain is debilitating and has been life altering. I use to be a vital person with boundless energy and great verve. Now it is an effort to leave the house as the fatigue/pain is overwhelming. I am now facing the possibility of thyroid cancer (I will be having my 2nd biopsy soon) which has put me into a space of great unknowns. I am blessed with many loving relationships but find that I am chosing a more internal path, as I do not wish to bother anyone as this has gone on for so long. My own doctor of 22 years is stressing me out, saying he is frustrated with my condition. Your point about doctors echoed his very words. I am going to email him a copy of your article in a caring way.
It is my greatest wish to be well again- and I will. I would also like to extend my very best to everyone who has responded to this article. Your posts made me feel less alone.
Lee, you have been my inspiration for a very long time. You are a beautiful soul and I will continue to pray for your healing.
Warmest Regards,
Jillian
http://en.wikipedia.org/wiki/Doppelgänger
Did you ever expect this momentary experience to be so hard? Especially with the waxing and waning of the auto-immune disorders. Homeostasis is my most favorite word. xxs
I like the idea of destinies, crossing paths. Until our next communication, I send you love and eternal support.
x00x0x0x
-j-
My headaches were the worst that I've had. My daughter rented funny movies and I would keep leaning and leaning into the pain and before I knew it...I was laughing. Laughter is a great pain medicine.
I do agree with how we can be treated by someone such as a pharmacist when we go to get a prescription filled. I had had another surgery (11 on the left side) and went to pick up some darvocet for my first couple of days out of hospital.
The pharmacist asked me in a loud voice if I was addicted to darvocet!! I left and did without the med. (I reported him to the pharmacy board and he was suspended for ten days, without pay)