It has been about three years since I last posted anything in this chronicle. I told myself at the time that I would only post anything new if I came up with something new to say that might be helpful to someone else, either to a pain sufferer or to someone trying to understand what a friend or relative might be experiencing. And, although I have continued to be in varying degrees of pain over the entire time, I didn't think I could articulate much that was new, so I have been silent (at least in this forum). 

I can't be sure whether or not what I have to say now passes the bar that I set a few years ago but I can say that over the past three years, I have managed pretty well. My pain has had it ups and downs. Sometimes, usually with the start of a new medication, I think that I am making real progress but this never seems to last very long. I have not been depressed and I think that I have been quite productive in what I do: family activities, artwork, studying and volunteering my time.  My family, of course, has known that I sometimes suffer from a lot of pain and they have had to make allowances for me - probably more than I care to admit to myself. (Sometimes it almost feels as if my family has gradually come to see me as somewhat disabled -- and that I am the only one who didn't get the memo!). I continue to have flare-ups, which sometimes scare me, and I have done my best to try to be cheerful when this happens but I can't promise that I have always succeeded. Overall, my days have gradually become shorter: I schedule my time much less intensely. Fatigue is a big part of the picture, coming both from the experience of pain itself and from medication which may (or may not) be helping. Despite it all, I remain a generally happy person. As I believe I said in my earlier posts, I don't have a degenerative illness like other, far worse, neurological conditions. In this, as in other ways, I am very, very lucky.

One change that I have recently noticed, sadly, is that at nearly 65 years old, having something the matter with me is less unusual among my peers than it was a few years ago. It is easier now for people to somehow see this as another symptom of old age -- which of course it is not. But as my peers unfortunately begin to have more and more infirmities, my suffering is less unusual. It begins to seem like just another inevitable fact of life.

Since it has been a long time, let me review and refine some of my earlier observations about how best to help friends emotionally to deal with chronic pain. Notice that I said "emotionally." I am assuming that you are not health care providers with specialized technical expertise. And even if you are, I am talking about how best to be helpful to friends or family in a personal way. 
It is good to remember that chronic pain is usually pervasive. An injury to a hand or a foot begins a process where your brain may send random pain signals virtually anywhere. So it may hurt in one place more than others but, unlike a discrete injury, the painful sensations are routinely felt all over. When I have a bad flare-up the only places that don’t hurt are my earlobes and the tip of my nose – and I think this is pretty typical. I know this is very hard to imagine and it may seem worse than it actually is, since, on some level, we get used to it and learn how to manage it. But in this respect, it is probably different than the pain that you may have experienced.

Chronic does not mean unchanging. It means that unpleasant sensations are always there. It never goes completely away and the initial cause is no longer the problem. The pain itself is the problem and it changes in scope and intensity, often for no apparent reason. This changeability is hard to explain to people who haven't experienced it. But you should know that if your friend tells you one day that she is feeling well and she exudes optimism, it doesn't mean that you should never ask again. It doesn't mean that she thinks she is "all better" - and you shouldn't think so either. We have flare-ups. We have a natural ebb and flow of pain and sensation month-by-month, hour-by-hour and day-by-day. So, if you have the capacity to do so, please keep on asking, at least occasionally. I am sure your friend will be grateful.

The best help you can offer to someone who suffers from chronic pain is a good dose of empathy. If you ask me how I am and I answer that, honestly, I am not feeling well, it does not mean that I am looking to you for a solution to my problem. So don't lead with: "You should see my chiropractor", or "you should do Tai Chi" or "My brother-in-law is a big doctor. He could definitely help you."  Even advising people to learn to practice meditation is not helpful if it sounds formulaic or preachy. (I confess to being occasionally guilty on this count myself). This is not to say that friends never can offer useful practical advice to one another, but positioning yourself as the one with the answer actually distances you emotionally from the one who is suffering. You are not going to have an idea that makes my problem go away. Chances are that your friend has already spoken to experts, that the matter is not simple, and she is not looking for a magic bullet. It's fine. You don't need to solve the problem but simply saying: "I am so sorry you have to go through this" can be enormously helpful.

This is not easy. Expressing empathy for someone else's suffering requires me to acknowledge to myself that it could just as easily be me who is suffering. And if this is sometimes difficult to do with a non-life-threatening problem, like mine, how much more so in situations that are far worse. I am sure that my own life-to-date track record in this regard is nothing to be proud of. Until I got sick myself, I really didn't get it.  This just doesn't come naturally to a lot of us. But I am certain that people in your life who are suffering from any difficult condition would appreciate feeling that you can in some way put yourself in their place and, yes, that you feel their pain. Easier said than done, I know. But it is worth thinking about. In any case, please don't act as if you know the answer to my problem because you don't. But, since we are friends, your emotional presence can be probably help.

Right now, I am in the midst of an unsettling and sustained flare-up, after having experienced several months of significant relief on a new medication. It's pretty disappointing. Why these flare-ups happen is anybody's guess and I am not going to talk about medications, dosages etc. -- all things that people who suffer from a chronic condition spend an awful lot of time ruminating about. Flare-ups like this have happened to me before and things usually settle down.  Although this one has being going on for longer than usual, I am confident that this one will gradually settle down too. 

But in the meantime, while it is fresh on my mind, let me explain why these things are so emotionally difficult: For one thing, a higher base level of pain all the time is extremely challenging. It is both painful an exhausting. So I have been doing (even) less than usual and it is hard to predict how a day is going to go. I haven't had to cancel any major events or meetings. I still led the Passover Seder, although I contributed less to the preparations than I expected to. I am a loving but extremely unreliable baby sitter for my two grandsons. The fatigue, which goes along with the increased pain, is pervasive and sometimes can't be ignored. I deal with it by some combination of sleep, self-imposed (and very therapeutic) trance and meditation (for the latter I use Jon Kabat-Zinn's guided meditations for pain relief. I think the man is a genius. His book, Full Catastrophe Living, is also worth a look). 

Flare-ups make me anxious, especially those that last longer than usual. It feels terrible to say to myself: "Oh my God, it hasn't been this bad before. What if this is simply it? What if this is my new baseline, to be followed by future flare-ups to an even more intense baseline?"  So far, I have adjusted quite well to everything that this syndrome has thrown at me. And I am really quite proud of that. It has taken a lot of work and discipline to stay on top of the "self-care" that is essential to managing my situation.

When I made a round of (too many) doctors a few years ago, several of them asked me, routinely, if I had ever thought of suicide. They were ticking off a box but I was shocked to even be asked that question. The answer was, and remains, a resounding "NO"" but the question sure left an impression on me. At the time, I was surprised that they even asked but it no longer seems like an unreasonable question for a doctor to ask, especially when evaluating someone whom she doesn't know well. A fragile person, or someone without social and financial resources, could really become unhinged by this. This collection of sensations could make you feel really desperate.  I am fortunately not desperate now but who's to say the next stage isn't going to push me over the edge? The voice of anxiety inevitably rears its ugly head when things turn south but in the moment, I remain confident that I can handle whatever this thing throws at me.

Please don't see this post as a complaint. I really don't have much to complain about. I am very grateful to my friends and family for all the support and understanding that they offer me, day-in and day-out. I hope this post taught you something useful and interesting. I have tried to offer some helpful observations, based on my own experience, on how to be a good friend to others who suffer from chronic pain. I will write again if/when I have more to offer in this regard.