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Ray Jamieson

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How do you manage a chronic illness from 2 viewpoints - the person who is ill, and their immediate career?

Life isn't always a straight line. We get thrown curve balls. How we manage them is the key to whether we make it or not.

People with chronic illnesses suffer from their illness or disability, but also from the guilt of not being able to do more, and from feeling like they are taking away the time of the life of the person who cares for them.

Generally, a chronically ill person (not necessarily terminally ill) is in pain. Sometimes incredible pain, more than anyone should have to bear. As one lady said "Childbirth was agonising, but it lasted only 14 hours and I had a smiling bundle of joy at the end of it. This is worse pain, it never ends and I get no joy from it at any time!"

Often they are financially disabled, because they cannot get out to work, and need to rely on a pension if available, or whatever money they can create.

Medication is expensive. Sometimes, the medication that is proven to work in one country is not available in another - lots of that problem here in Australia! Or it is INCREDIBLY expensive!

Often, they are depressed, and who wouldn't be? Trapped either at home or in care by a condition they didn't choose.

Enough to make anyone depressed, angry, frustrated or just plain grumpy for a whole variety of valid reasons.

Their carers have to manage this, as well as have their own lives. If it's a spouse, they have little chance of an escape, as they can't go home and away from the role - often it is at their home.

My question is, how do you manage? What strategies do you employ to handle the challenges and stresses of being chronically ill, or caring from someone who is chronically ill.

This is personal for me, I have this situation in my home.

I have blogged about it and asked these questions but would love feedback and ideas. http://www.lifechange90.com/chronic-illness/ is the web page, and the blog is http://www.lifechange90.com/challenges-of-chronic-illness/

What is your experience? What do you do?

Thank you.

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  • Nov 14 2013: Thank you Ray for posting this point for discussion. It is helpful for me to think more deeply about these issues. Today, I feel a sense of hope. Two other books that I can suggest are Tom Wootten's "Depression Advantage" and a book the he suggests, "Dark Night of the Soul" by St. John of the Cross. Again, these are simple books ... the second book is just over 100 pages but it is the content of these pages that matters most. (A recurrent theme here!!) I know that mental anguish is different that severe chronic physical pain but there are striking parallels. I suffer from PTSD as well as chronic depression ... (the epilepsy is just icing on the cake). Some people have charmed lives (or at least appear to) ... on paper, my life history may not seem enviable in most ways but it is mine and I make it a life worth living ... I make it a "charmed life". St. John of the Cross was imprisoned unjustly and tortured .. I was beaten and severely abused as child and I survived a violent assault in adulthood, you suffer a chronic and excruciatingly painful illness. People like us could grow bitter or we can find ways to transform our pain into something that benefits ourselves and nurtures others. I will bookmark your blog Ray. Please know that there are many people who suffer and that it is possible to find peace, even beauty despite this suffering. Keep planting tiny seeds and I promise to as well ... Together, we will find a way to garden again.

    With Love,
    Juniper
  • Nov 14 2013: I don't relate spiritual to religious either. They are very different subjects to me also.

    Personal development, personal growth, these are choices made by the person, not so much about accepting the dogma of someone else's teachings, they are a journey of self discovery, that may lead to following another's philosophy or teachings, but it doesn't start there...

    So many people I know of have "surrendered" to a religious belief or doctrine and in doing so, given away their own power, and therefore the belief that they can ever better their position, or even influence it! They are waiting for 'their God' to do it for them, and that isn't how it is meant to work.

    Even the Bible said "God helps those who help themselves" and yet so many just sit back and wait to be 'saved', 'healed' or otherwise...
  • Nov 12 2013: Like anything else that cannot be changed, accept it for what it is, and move on. A fatalistic approach may help for those inclined to use it.

    Learning not to think about it may also help. Distraction is key here, preferably ones that last for hours at a time, as well as company.
    Back when I was in the military, I often turned more depressed during sentry duty, less because the duty itself was unpleasant, and more because I had much bigger problems that it gave me a long time to think about it with nothing to do, all by my lonesome. The opposite of distraction, if you will.
    • Nov 12 2013: Thank you Nadav, good point. Depression is one thing - what about pain management? When the medication prescribed for the cure causes side effects that create incredible pain for hours at a time, or when the neurotoxins are released by the parasites as they die, the pain is incredible.

      How do you manage for sometimes 20 hours plus straight, when you have taken the maximum pain medication allowable, and it makes no difference to it? There are pain management courses here in Australia, but they seem to be funded by the workers compensation type of organisations, and aimed at getting you off your insurance claim and back to work so they can call you "cured" and off their records again... The pain management strategies seem fairly juvenile..

      There are thousands, if not hundreds of thousands of people the world over in this situation at any given time. I'm sure the doctors and scientists are working hard to find cures, but how do these people manage, hour after hour, putting up with this level of pain...?

      That is something that would be worthwhile learning...

      I have blogged about it, written about it, we have discussed it and we have some ways of dealing with the mental aspect, but so often I am asked "what else is there?" and I'd love to have answers.

      We can help people get through and have goals and achieve meaningful things with their new lives, but still, I know of so many people struggling, not with the big things, but the little things, like getting through the day when the pain hits hard... I'd like to have THAT answer to pass on..
      • Nov 12 2013: I can relate what I learned from my non stop back pains in the military (living on a ship whose ceiling was as high as my shoulders did me little favor), as well as the general day to day things that turn military life unpleasant (no sleep, bad food, officers thinking they're god, people trying to kill you...).
        I handled it by falling into a depression, throwing my motivation out the window, becoming extremely irritable, and picking the occasional fight, non of which actually made things any better. Not exactly what I'd call good advice.
        I never managed to find any proper solution, and its not for lack of trying.

        Sometimes, there is no good answer, or good outcome, and the best you can do is learn to live it with. Willpower being a renewable resource that never the less always seems to deplete faster than its produced, mental techniques will only take you so far.

        If there's anything I've learned over the years, is that there's no justice in the world, and that no one ever gets what they deserve.
        Sometimes, life's just unpleasant, and there's not much to be done about it. C'est la vie.
      • Nov 14 2013: There are some Buddhist meditation techniques that may be of help with pain. A friend suggested the Shambala Center in Eagle Rock ... they have a special series that focuses on how to practice when suffering from illness. I will admit though, that my practice was not strong enough for me to successfully engage meditation (after abdominal surgery) when the pain levels were at their highest (and this was only for about 4 days). I could not imagine suffering long-term excruciating pain. I sincerely hope that you are able to find some relief and inner peace.
  • Nov 12 2013: I read something by Thich Nhat Hanh once that helped me. He said something to the effect of : If you love to garden and you are heartbroken because you can no longer garden, plant one tiny seed in a small pot near a window. My entire world became much smaller when I was injured and I must now learn to find joy in the smallest of things.
    • Nov 12 2013: Excellent philosophy. Any goals or plans you have under these circumstances can be changed without warning by the events around your condition on the day. Staying small in some ways is a great idea, much like building a jigsaw puzzle. No need to get it all done in one session, a few pieces at a time and let the picture/garden emerge.

      How do you set goals now? What is your strategy or plan for your future? How has it changed? I'd love to know...

      Do you feel supported in your planning and looking to the future, or do you have to do it alone?
      • Nov 14 2013: Hi Ray,

        Sometimes, it is quite difficult because due to the head injury, I am not able to maintain the type of concentration that I need to. I fatigue easily. I also suffer from epilepsy. My friends and wife are ambitious, highly intelligent and accomplished people. Some days, I seem to accomplish next to nothing ... "bad days". There are days when I can think of nothing but how I may end my life and I hate myself for the things that I have failed to accomplish despite my earnest effort. I try to remember to think beyond myself. I have travelled and I have seen great suffering in the world. I remember a man with leprosy in India and children picking up beans that had fallen from a truck by the side of the road in Nicaragua. I can even look out my own window and see the young woman with schizophrenia who trades her body for drugs. While, I do not feel any comfort in knowing that others suffer more than I do ... I know that I am in a place to help them to some extent and it is my desire to help that makes it possible for me to get out of my dark places. I am committed to helping my community, locally and globally. I am not rich and so, my help is really just a drop in the bucket .. volunteering .... helping to feed the homeless, to check in on friends who may be lonely, being as useful as I can be .. I guess ... but as I said before, I have had to learn to find joy in the smallest of things. My goals are more about spiritual development than material achievement. I am very lucky because I have a wife who loves me and I have friends who love me as well. I often do not feel worthy of this love but each day I try to be more worthy of it. I guess that this is my goal ... to be a person worthy of the kindness that is given to me ... a person who shares what they have with those who have even less than I do. A person who gives back with a grateful heart.
        • Nov 14 2013: Very interesting response: Your goals are more about spiritual development....

          To be a person worthy of the kindness given to me...

          Echoes of a person who has looked deeply within... You probably related to my blog, above...
      • Nov 14 2013: One more thought on this: this is not about religion ... I am essentially Atheist ... not a staunch one but more like the type who might reconsider if the sky parted and God (herself) came and smacked me on the head ...(maybe she already did?) but .. essentially I am an Atheist who is benefitting from Buddhist teachings. Anyway ... when I say "practice" I mean starting again .. and again ... and again ... the "goal" is to continue starting. So, when you are in pain and you lash out in anger ... you start again ... when you fall ... you start again .... when you want to escape ... you sit ... and you start again. The person with you, (the person who is playing the role of caretaker) is probably practicing in much the same way. You are doing this together and you are on the same side .. you are each other's teacher and healer ... even when one of you seems angry ... despondent ... or weary. You are caring for each other.
  • Nov 15 2013: Thank you. Beautifully said. It is the reason I posted this question, and the blog, http://www.lifechange90.com/challenges-of-chronic-illness/ - to make a difference!
  • Nov 14 2013: When I was 18, I worked in a 90 bed institution for people with profound mental retardation. Most residents had been there since childhood and few had visitors of any kind. Abuse was common and many patients/residents were malnourished and looked like skeletons. This was an ICFDD (intermediate care facility for the developmentally disabled) and due to legislation, the Lanterman Act, these facilities were closed because of the very high prevalence of human rights abuses. But ... at 18 ... I saw the help wanted signed out front and walked in thinking it was a retirement home. I was given a tour and I could not believe what I saw. Most people were in wheelchairs, many were illegally restrained. It was really the stuff that nightmares are made of. I had survived a brutal childhood and I simply could not abandon the people that I saw living in this hell-house. I took the job and became a licensed certified nurses aid. The work was back breaking as well as heart breaking. Within a couple of years, the government closed these facilities down and moved the residents into 6 bed group homes. Programs opened to provide community integration. Most people who had lived in these homes had rarely gone out. The goal 1 Hr, 1 x per month. As soon as the community integration programs opened, I began working in community integration. The lives of the people that I worked with became much better. As far as "care taking" there, I never once questioned the value of the lives of the people I worked with. I loved them and I wanted to help them. By helping them, I was able to heal in a way that I could not have healed otherwise. So ... Ray ... if you need help with even the most humiliating things .. bathing, using the bathroom, eating .. anything ... know that the person helping you may be doing these things for themselves just as they are doing them for you. When we care for others, we care for ourselves.You may feel that others are "caring for you" but Ray, you care for them equally.
  • Nov 12 2013: I understand that this was your situation Nadav, and this was how you handled it. But I'd love to know how others handled their situations, so that we can find better ways. Thank you for your contribution. I hope your situation is better now than it was then.
  • Nov 12 2013: What is the difference between a "Chronic Illness" and "Chronic Pain", as you see it? Do you manage them differently?
    • Nov 14 2013: I think that the two, chronic illness and chronic pain are often intertwined although it may be possible for some people to experience a chronic illness yet transcend the pain.

      I do not experience chronic physical pain. When I have experienced severe pain, I was unable to keep my focus on my spiritual practice but I have heard that if one practices consistently, one can maintain concentration. I am only a very beginner and I wish I had more to offer but I know that there are books on Buddhist Philosophy that are dedicated specifically to this subject. I can suggest a simple book by Thich Nhat Hann called Peace is Every Step. It is a simple book (and a very powerful book) but a friend suggested it to me and it has helped me.