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10 Goals When You Can’t Be Cured

November 21st, 2008 · 6 Comments

For many of us, chronic pain is exactly that – chronic.  Meaning it’s here to stay, it’s settled in - it’s not going away.  What changes when you can’t be cured?

cat settled in on couch

“Settled in”

I recently heard William Breitbart, Chief of Psychiatric Services at the world-famous Memorial Sloan-Kettering Cancer Center, speak about “Pain and End of Life.”  He spoke about changes that occur when someone is given a terminal cancer diagnosis.  He presented 10 items people wanted when “cure” wasn’t an option.

  1. symptom control
  2. focus on the quality of life which still remained
  3. a dignified death
  4. reflect on the meaning of their life
  5. strive for inner peace
  6. reconciliation with others
  7. forgiveness of others and asking for forgiveness for themselves
  8. don’t die alone
  9. die at home
  10. understand what their legacy will be

I began to see these as relevant to chronic pain, too.  Here’s how I would revise them for chronic pain.

  1. symptom control, as much as possible
  2. quality of life, even with pain
  3. dignified life and dignified treatment
  4. take advantage of the challenge of chronic pain to reflect on the meaning of life
  5. strive for inner acceptance
  6. request and accept help from others
  7. forgiveness of your own body for not healing; forgiveness of your medical team for not curing you; forgiveness of others’ imperfect understanding of your pain
  8. don’t suffer alone
  9. access to the least invasive treatment possible, but availability of more intensive treatment (for example, a day hospital rehab program) if needed
  10. understand the meaning of your illness to you

Readers, what do you think of these as goal for living with chronic pain?  As I always emphasize on this blog, working towards these goals would be a process, knowing and accepting you won’t be “perfect.”  What are your thoughts?

Thanks to Louise-Paisley at Flickr for the photo.


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6 responses so far ↓

  • Elizabeth McClung // Nov 21, 2008 at 7:05 am

    Thank you for posting both lists, so often people with terminal illness which aren’t cancer are sort of left to figure things out themselves. A form of dignified treatment I would put as a high value along with a least invasive treatment.

    However, for both dying and suffering alone. I don’t know how to connect with the living anymore, or even with those in chronic pain. What do you say when someone with chronic pain tells you they would rather shoot themselves than be you (“Well, you are literally jumping the gun!”) – it tells you how alone you really are. And for those who don’t suffer chronic pain, it is very difficult to understand.

  • Maureen // Nov 21, 2008 at 2:18 pm

    I liked your revisions for those with chronic illness. I am wondering if anyone else has the same experience I have had with doctors as it relates to some of these. . . I hope maybe someone will comment back – I have come to accept my life as it is now, not in a negative “I’ll never be the same person again” way, but in knowing I need to do things differently than I used to. I also have found peace through my religion, and that has given me a chance to reflect on the meaning of my life. When I share any of that with doctor’s, they seem to take it as a negative, or read acceptance as depression. I don’t feel depressed, I know that things are different and instead of banging my head against the wall wishing they hadn’t changed, I’ve come to accept the changes and make the best of what I CAN do.

    Has anyone else experienced this? Does anyone have any advice on how to respond to people to act this way?

    Thanks!

  • Deborah // Nov 21, 2008 at 4:22 pm

    Maureen,

    I, also, related to the 10 changes that occur when someone finally comes to accept a diagnosis of chronic pain. My spiritual practice, this past year, is helping me put my chronic pain syndrome from my mastectomy in a totally fresh perspective. It is neither resignation, nor is it a negative “giving up.” Rather, it is an attitude of striving to put the pain in a larger and broader context in which I view it as part of my life-path, as part of the way I can reach out to others. Each day is a challenge of perspective, a chalenge of view, but with an accepting point of view comes a peace of mind that often leads to a reduction in pain. Pain, I’ve discovered, does not have to lead to suffering.

    I just discovered this website today and am grateful for it! Thanks for your post, Maureen.

  • How to Cope with Pain // Nov 21, 2008 at 8:03 pm

    Elizabeth, it is hard when something that is a big part of your life isn’t understood. I think the best we can do is to try to let others know our situation, but understand when it’s hard for them to “get it.”

    Maureen, it sounds like you have come to a point of acceptance – not an easy task. Perhaps a way to explain it might be that acceptance brings some sense of peace, while depression would be discouraged and disheartened

    Deborah, glad you found How to Cope with Pain. Hope you’ll continue to contribute.

  • Terri // Nov 23, 2008 at 1:34 am

    I think that is a wonderful and thoughtful list. I live with chronic daily headache (and have for almost 11 years). I feel like I have lost some of the best years of my life. But I also think I have learned more lessons about humility and compassion and grace and humanity than I would have otherwise. It is a battle to stay positive often, but this has become my life and that acceptance, of the illness, of myself, of others, of the “system” has finally started to come.

    Great post and wonderful thoughts. I will print it out and look at it often.

    Thank you! Terri

  • VICKIE // Feb 18, 2009 at 11:23 am

    I THINK THIS WAS A GREAT POST. NO, I HAVE NOT ACCEPTED WHAT HAS HAPPENED TO ME YET, I DON’T WANT TO. I JUST WANT TO GO BACK IN TIME AND BE (ME) AGAIN..BUT I KNOW THAT WILL NEVER HAPPEN…I FEEL POWERLESS OVER THIS ILLNESS OF R.S.D..AND IT IS CRAWLING..I DON’T EVEN WANT PEOPLE TO SEE ME THIS WAY..I WAS ONCE HAPPY, A GO GETTER, AND NOW AS SOON AS I AWAKE, OH MY GOD, HAVE TO TAKE A PAIN PILL. THEN SOMETHING FOR ANXIETY. BUT, I KNOW, THERES NO TURNING BACK. IT HAS HAPPENED, AND THERE IS NOTHING I CAN DO ABOUT IT. PANHEADVIC

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