Non-Advice for Chronic Sufferers

Posted on August 15, 2007 by Dave Pollard
suicide
Image: Suicide by Scandinavian artist Joakim Back.

The most moving character in Nick Hornby’s amazing novel A Long Way Down, about four would-be suicides who end up in a kind of crazy self-managed support group, is Maureen, the woman stuck looking after her severely handicapped teenage son. She is an example of a sufferer from what I called in my recent post on managing stress the ‘fourth source’, the chronic stress that imprisons the sufferer for a long period or even a lifetime, as contrasted to the three ‘transient sources’ of stress — sudden changes, time pressures, and unwelcome surprises. I explained:

[This fourth source of stress is usually] a longer-term adversity, such as having to look after a loved one (or worse, someone you don’t love), or putting up with constant physical or emotional pain or disfigurement or a life-altering disability. The people I know who face such stresses have told me they don’t feel courageous or like martyrs: What seems to us to be courage, they say, is simply not having any other choice — we do what we must. Nevertheless, to me, this would be a form of imprisonment, and, like all of nature’s creatures, imprisonment is what we fear most, the form of stress that has no resolution, no relief, no way of coping through resilience. Those who are imprisoned, regardless of whether anyone thinks that imprisonment is real or self-inflicted, are the unhappiest people, I think, in the world. It is no wonder they seek escape, solace, through drugs or religion or suicide.

I know quite a few people in this situation. My father is coping with his second wife’s long-term dementia and physical illness. Some of my friends (and some respondents to the above post) are coping with similarly ill elders or children or other loved ones, and have put their own lives on hold, indefinitely. I know people who are living themselves with chronic agonizing physical diseases, or debilitating, exhausting mental illness. I know people who are in prison or some other involuntary institution, or trapped in jobs that they have no choice but to stay in. I know people who stay, for reasons that fill me with astonishment and dread, in relationships where they are chronically and severely abused. I know people who are addicted to substances that make their lives, and those of people who once loved them, an endless living hell.

These are people in prisons as real as if they had bars and locks on them, who live lives of what Thoreau called “quiet desperation”. Suicide and other quick escapes from the constant suffering and agony are, for most, ‘a long way down’, as Hornby explains. For them, there is no conceivable way out.

Some people have asked me what to do if you find yourself in this situation. I have no answers. In my youth I suffered from severe depression, and while it did not last that long it kept coming back, and when I was in that terrible place fighting the noonday demon it was as if time stretched out forever. I got lots of advice, most of it bad, and all of it useless. I tried all the solutions and none of them worked, and most of the people I spoke to admitted none of them worked for them either.

Some of you may think it’s unfair or unreasonable to compare someone suffering from a crippling physical or mental illness or addiction to someone coping with the illness of someone else, but I see these all as just different types of prison — the experience is the same, and I will not pass judgement whether one prison is more honourable than another. Severe and uncontrollable suffering is unbearable, and chronic suffering that just endures and goes on and on every day is a thousand times more unbearable. I have no answers. We do what we must. Part of my unbearable grief for Gaia is feeling for all those in the world who are suffering, but my sympathy doesn’t help any.

In Hornby’s book, his character Maureen says:

You know that things aren’t going well for you when you can’t even tell people the simplest fact about your life, just because they’ll presume you’re asking them to feel sorry for you. I suppose it’s why you feel so far away from everyone, in the end; anything you can think of to tell them just ends up making them feel terrible.

When I was in the blackness of depression the fact that people cared for me and worried about me and wanted to help meant nothing to me. They couldn’t do anything. I didn’t expect anything from them. I didn’t care about them, and the ones that really pestered me with worry or useless suggestions or offers to help (if I told them how) or gratuitous advice (“cheer up, snap out of it”) just annoyed me. Depression is still considered by many a ‘selfish’ affliction, a weakness that indicates lack of resolve or lack of courage, so at least I didn’t have to cope with lots of people worrying about me. I did what I had to do, and was fortunate enough, unlike some, to wake up from the nightmare, with no one’s help, including my own.

So I don’t know what to say to people who ask me What Can I Do? — to make the suffering less unbearable, to reconcile oneself to one’s lot. Some people swear by support groups, not those put on by well-intentioned (or not) psychologists or social workers, but those run by fellow sufferers who (supposedly) know what you’re going through, and can perhaps sympathize and offer coping tips. They never worked for me, so I won’t recommend them, but I guess it depends on your situation and your ability to get value from these things. I doubt prisoners on death row have a support group, or would want one. For some it can help just to talk it out, and if that works for you, that’s great, provided you can find a patient listener. That never worked for me either, though it has for some people I know, and I’ve tried to become a better listener, and to realize that my role is not to proffer answers (since there usually are none) but rather to help the other person make sense of their predicament and their agony in their own minds. I’m not great at this, but with practice I’m getting better.

There are some who turn to drugs or religion or suicide, none of which I ever had much use for, or would recommend, but neither would I pass judgement on those who find any of these works for them, as long as the perpetrator of these ‘cures’ doesn’t gouge the sufferer for a lot of money when they are vulnerable to being gouged.

I’m sorry. I usually offer answers or at least approaches on this blog, but for sufferers in long-term prisons of one kind or another I don’t have any to offer. If other readers have suggestions, they’re more than welcome to post them in the comments thread below (or e-mail them to me if the temperamental RadioUserland comments thread doesn’t work).

That’s all I’ve got.

Category: Being Human
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14 Responses to Non-Advice for Chronic Sufferers

  1. Mariella says:
    August 17, 2007 at 10:18

    Here is a cognitive excersise we can play with ourselvesNo matter how badly we can feel, we always know how we are feeling in the present moment and how we would like to feel…… =…. there is a present state …..and a….. desired state.Usually we regret the undesired and overvalue the desired one.If we could validate both desire and undesired states at the same time, and at the same level of value, our brain will not be able to process this information, and will beging looking for a new third way…… it will take you away from both states and create a third one.A new alternative one … first felt as an emptiness… then , just let it go….If we try to validate heaven and hell as equals, they will both loose the meaning they had previously to the excersise.The origins of this technique dates from the 1920 ies developed by a doctor called Volpe as the reciproc inhibition technique, now it is known also as collapsing anchors..

  2. Mariella says:
    August 17, 2007 at 10:23

    What I mean is that we have in our brains a lot more information that we can handle consciously… with this kind of exercise we allow our brains to build a different sense about what we are living in the present moment….. we re-direct …. trust your brain…. !

  3. helga says:
    August 17, 2007 at 13:28

    I feel such sadness reading your post. I wonder if part of the problem is how people interpret the meaning of their problem. What some people see as a prison, others are able to see as a challenge without that element of hopelessness. The people we could learn from are those who have suffered these extremes without succumbing to despair. Off the top of my head, I think of Victor Frankl in Nazi camps, Nelson Mandela spending those many years in prison. Christopher Reeve and Stephen Hawking living with extreme physical disabilities. While some people feel imprisoned by the need to care for a sick relative, others choose to make it their work to care for the sick and the dying and do it with joy. As for those in self-imposed prisons of job, relationship or addiction — we develop beliefs about “how life is” when we are very young and our brains are still growing. When those beliefs are very negative and they are not questioned and consciously changed, the pattern simply continues. What is different about the people who leave and change and those who stay stuck? Some of our pain stems from blatant denial of reality. Death is the reality of every biological creature that has ever existed. Yet so many of us create agony for ourselves because of the story that “people shouldn’t die.”There is so much magic and joy in the world. Wish that everyone were able to see it.

  4. Vish Goda says:
    August 18, 2007 at 10:39

    Dave,This is the first blog where I somehow believe you have given up – not because you don’t have an answer – you just want to believe in what you have. I may be wrong.But Helga, in her comments above – says it well – We just have to live with reality – and reality is life and death, misery and pain, happiness and sadness… in equal measure, sparing none.I dont know how well i will fare in such situations – but one thing I know I will do is never give up until I extricate myself from them one way or another – no point in living in misery for an extended period of time, is there? :-)But I do believe there is always a solution – one of them is to understand the nature of problem when you are in it, accept it head on and then work from there…And I think Helga has the right attitude for this…

  5. Vish Goda says:
    August 18, 2007 at 10:45

    Sorry, there is correction in the earlier comment that I am re-inserted here with correctionDave,This is the first blog where I somehow believe you have given up – not because you don’t have an answer – you just DON’T want to believe in what you already have. I may be wrong.But Helga, in her comments above – says it well – We just have to live with reality – and reality is life and death, misery and pain, happiness and sadness… in equal measure, sparing none.I dont know how well i will fare in such situations – but one thing I know I will do is never give up until I extricate myself from them one way or another – no point in living in misery for an extended period of time, is there? :-)But I do believe there is always a solution – one of them is to understand the nature of problem when you are in it, accept it head on and then work from there…And I think Helga has the right attitude for this…

  6. Amanda says:
    August 19, 2007 at 00:52

    It’s been a couple days since I first read this, and I’ve read it a couple times. I wasn’t really looking for any concrete strategies of how to deal with things that initially, and largely, seem unbearable. I know as well as you that sometimes there are no words of advice; there just aren’t. It’s like if someone close to you loses a loved one, and even if you’ve experienced the same loss, there still are no words… nothing that can make it easier–and you know this. I guess I was just looking for inspiration, for lack of a better word; some hope, some thread–whether direct or non–that offers some thing, some… hope (I guess). I know the feelings of hopelessness. And I think more than anything, those feelings are most terrifying of all. I’m currently trying to evade that slippery slope any way I possible can. I’ve learned that trying to find answers when there are too many or not enough is fruitless, because in the end, you find nothing (and feeling like a failure in your pursuits to boot). But… despite this, I don’t want to stop searching… for something, anything–whatever it may be… It’s just another form of hopelessness.

  7. prad says:
    August 19, 2007 at 11:38

    you may want to look at this concept which goes beyond the support group idea:http://familycaregiverssupport.org/it was derived working with children with disabilities and extended to caregivers.

  8. Alexxmw says:
    October 3, 2007 at 12:49

    If you want do delete your site from our spam bases – just email us with domain of your site:abuse-here@inbox.ruthank you!

  14. Lisa says:
    November 23, 2009 at 11:13

    Some of it is chemical; our brains slips more easily into that hopelessness state, and we are powerless to stop it. I’ve been on anti-depressants for years, and while they’ve helped, it isn’t enough to keep plugging quarters into a broken vending machine. If we had more understanding of our unconscious thought processes, maybe there would be a dream/ hypno therapy process that would strengthen our positive thinking and we wouldn’t have to struggle with outside influences, believing them to be the cause. Everything in life is swayed by outlook, and it’s the outlook that needs changing, on a cellular level. Chanting mantras, talking and support groups are only surface fixers. Until we can offer the cure for depression, maybe suicide is just better. We wouldn’t waste time and resources on prolonging the person’s misery.

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