Knowing Who to Call – Commiseration with the Right People Four weeks ago I met with a patient who told me that the night before she met with me she was an “11” on a scale of 1 to 10, with ten being the highest degree of suicidality. She was trying to do it all alone. And she has severe chronic pain. We talked about the psychobiology of suicide1 and how she can start being in the driver’s seat of her life. In order to do that she needs to ask for support from the right people, hopefully from peers who can relate to what she is going through. The following is a definition of peer support paraphrased from the article, “Peer support: A theoretical perspective” by Meade, Hilton and Curtis2. Peer support is reciprocal empowerment achieved through giving and receiving help from those sharing respect, responsibility, and mutual agreement of what is helpful. There is no basis in psychiatric taxonomy, labels or diagnostic treatment. It is the shared empathic experience of emotional and psychological pain that creates the therapeutic connection. The mutual affiliation affords an equality in status without the constraints of traditional (expert/patient) relationships. As trust develops over time peers are able to challenge each other’s old behaviors and encourage new ones. There is more information about peer support at www.jsp3.org. Understanding that this patient needs to develop peer support is vital to retraining her brain and creating new behaviors based on those new concepts. We discussed how she needs to realize who in her life actually supports her and who does not. But, more importantly, at pivotal times in our lives we all need to figure out who in our lives might want to support us but simply can’t because they don’t know how nor do they have the capacity to learn how. And the hardest lesson of all is realizing the people we think should be able to help us (like our blood kin or long-term friends) are either overwhelmed in their own worlds, living in fear of anything shaking their beliefs or holding on to their own preconceived notions that prevent them from opening their minds and hearts to new information. Hard to know what really stops people from having compassion for us when we need them. But it sure hurts when you need it and don’t get it or worse get derision, shame or blame instead. So we talked about how you actually figure out who might be supportive. The best indicator is past behavior. If a person has been supportive of you in the past or if you know someone who might be supportive of you if you build a relationship based on mutual honesty, you have a good prospect. But probably the most important aspect of finding supportive people is finding people who have been through what you have or have some intimate knowledge of a similar situation. Research indicates that peer support from troops who have had similar combat stress or other trauma can provide for each other mutual compassionate support that can actually prevent post-traumatic stress disorder3. So it seems if you can find someone who personally knows something of what you have experienced, you have a better chance of receiving “emotional support, informational advice, practical assistance, and help in understanding or interpreting events” (p.14)3. I know this for a fact. I have certain friends I call for certain kinds of support. I emailed a colleague last week after I worked diligently on a conference proposal for 5 days. I thought I had 2 hours leeway in submitting it. But after I entered it into the proposal portal, the date/time stamp on it revealed it was 2 hours too late. I had not noticed that the proposal deadline was midnight EST, not PST. All that work seemingly for nothing. I could only tell that to someone who had been there and knew what that kind of research and prep really meant. Few others would have fully understood how disappointed I was in my own stupidity. One thing that makes my chronic pain patients (and me, too, because I have chronic pain) frustrated is doctors that eschew the psychological effects of unrelenting pain. They treat the physical pain the best they can but usually spend no time dealing with the devastating mental effects of intractable pain. This is sometimes obvious when the patients gets the blame from the doctors who are relegated to just treating the symptomatic pain because they cannot successfully solve the causative health problem. I’ve learned when fibromyalgia lays me out for days, unable to walk but haltingly on my walker, there is nothing I can do. Day follows day and upon awakening each morning perhaps after a disturbed, pain and fit-filled night, comes the realization this day is no less debilitating than the day before. I do everything I can to mitigate the effects of unmitigated pain. I switch around my obligations as best I can, reschedule patients, ask for favors from husband and friends, reassess priorities, and accept this is how it is. I handle it the best I can by myself but sometimes I need help from others who know what this is like. I call my friend in Florida who has Chronic Fatigue and Fibromyalgia. She is one of the funniest people I have ever known and can make me laugh even when we are both in serious pain. We’ve known each other for 45 years. We’ve had our ups and downs and we’ve both gotten over disappointments in each other over the years. In contrast and in testament to our enduring friendship, we still celebrate moments of hysterical insanity from years of sharing work hours and the goofing off hours in between. But moreover, we can rely on each other for compassion in dealing with our chronic pain. I’ve been struggling all week with “through the roof pain” and broke down today, angry because I had to cancel another day of activity. I called her and make no mistake about it – this was not then nor is it at any time wallowing in distress. This was not misery loves company. This was and is vital mutual support for mutual suffering. When I call, she reminds me I’m not alone and that I do have much to be thankful for – but it’s the way she does it that makes it perfectly healing. I told her, “I’m exhausted from not being able to do anything.” This is what E told me. “I haven’t been in this much pain in years either. I think it could be the weather, but either way, this sucks. My house is a mess. There is so much crap on the coffee table I can no longer see the other side of the room nor the body from which my husband’s voice is emanating. I want to clean it up but I really only have the energy to think about it. When I’m watching our gigantic TV and I can no longer read the news crawl on the bottom of the screen, I know I have to start lowering the stack of crap in front of it.” We went on to talk about how we distract ourselves using different TV shows. I use stupid 60’s sitcoms. E uses true crime shows. She says, “whenever I start feeling really bad I watch a murder on ‘I’d kill for you‘ and then feel glad that’s not me.” She reminds me how grateful she is that she’s retired and does not have to work. She and I agreed that even in all of our pain, we need to be thankful that we do not have to spend our precious remaining days standing all day saying, ‘Hello, Welcome to Walmart’ or asking, “You want fries with that?”. See what I mean? P.S.: E called me the next day and asked me, “You didn’t think I was trying to “out pain” you, did you? Because I hate people when you tell them how much pain you’re in hoping to get some understanding, and they ‘one up you’.” She wanted me to know she heard me and that she wasn’t dismissing my pain with hers. She made me laugh again and really guffaw. I was grateful. The pain disappeared out of my consciousness for a few seconds more. There’s something special about knowing who to call. References: 1 Jensen, R. (2012). Just Because You’re Suicidal Doesn’t Mean You’re Crazy: The Psychobiology of Suicide. Smashwords. 2 Mead, S., Hilton, D., & Curtis, L. (2001). Peer support: A theoretical perspective. Psychiatric Rehabilitation Journal, 25(2): 134-41. 3 Defense Centers of Excellence. (2011). Identifications of Best Practices for Peer Support Programs: White Paper. Retrieved from www.http://dcoe.health.mil
WHAT IS THIS? FIBRO SUCKS…
My apologies to those who read my last blog which was the same as the one before. I’m still new at this… My good friend just told me she is paralyzed with malaise. This is much the same situation I had just revealed to her. I sit here, with her in mind, wondering the same exact thing she tells me she wonders. I’d give almost anything to know what causes this overwhelming malaise. And along with it, of course, is that indescribable pain that we keep trying to describe, though nobody but another who has it seems to be able to understand it. When anyone wants to know about the pain, I tell them, “on the worst day of the worst flu you’ve ever had, when your hair, your fingernails and your skin hurt and your bones down deep ache like you’d swear they were disintegrating…that’s what it feels like most days.” And then again there is the malaise. Why does it flare like it does? It does not seem to matter whether you have big plans (goals to look forward to) or little inconsequential plans (no big deals going on) or none at all (no stress to get anything done). It happens whether I just finished a big stressful project (exhaustion from relief of putting forward a huge effort) or just returned from fantastic time off (let down from a lot of downtime back to up tempo living). You never stop struggling to figure it out. And there is always someone who will try to help you by telling you to reduce your stress. There is only one way not to have stress in your life but that way is totally incompatible with life itself. At one time I thought it was that I had too much too look forward to, too many plans piled on top of each other. So I got rid of some of those onerous plans and I still felt the same way. Maybe I felt incompetent to get targeted things done. Perhaps I didn’t have the expertise to do it completely or sufficiently. To counter that possibility, I began developing a cadre of competent advisors and confidants who I could rely on to help me. I still felt the same malaise. Apparently even knowing who to call did not prompt me to call. Then I thought, could it be that I am tired of life? Could I really be saying, “I don’t want to be here anymore and I’m bored with it all?” That’s suicidal talk if I ever heard it. But I’ve been suicidal before and seriously so. Being suicidal from age 8 to 32 is seriously, majorly suicidal. I am an expert on feeling suicidal. After all, I am a suicidologist, I have overcome it and I write books on how to overcome it like Just Because You’re Suicidal Doesn’t Mean You’re Crazy: The Psychobiology of Suicide and the next book to come, CPR for Suicidal People. Moreover, I know contemplating suicide is only an effort to make a person feel better. It is a simple and effective coping mechanism as I explain on my website, https://www.jsp3.org. Contemplating freedom from every daunting and incomprehensible problem promises peace and nothingness. But I know I want to live – I just don’t want this pain and malaise. Feeling suicidal can strip you of energy and desire. But I have desire. I have tons of desire. I have so much desire it eats me up. I don’t have to kill myself because it kills me just sitting here contemplating what I cannot get up and do. It sounds like “depression” says my mental health counselor self. Well, this is not depression as noted in the bible of mental health disorders, the Diagnostic and Statistical Manual of Mental Health Disorders. I laugh at funny things. I sleep well. My appetite has not changed. I don’t feel like dying. I’m not persistently sad. I do things I have committed to do. I do my volunteer work and get plenty of satisfaction from it for as long as that lasts, which does not seem very long. But what I am is tired and in pain and I am bored of it. I am on the only regime of pain medication that can be done at this time. The pain is tolerable. I simply do not understand it. I have a mission in life – I know what I want to do, what I feel I am called to do. I have hundreds of unfinished undertakings. People are right in that pain can be exacerbated by stress and emotional upset. And joy is antithetical to pain. But life is stress. You can’t avoid it. In order to try to mitigate the effect of pain, one must intervene on life’s stress by probing into possible sources of stress. Now comes the existential questioning. What in my life has given me pause to go forward?… What has disillusioned me so much that I cannot move towards my own goals?… What has given me the idea there may be no point in going forward? …What has happened and how am I interpreting it?… Has anything happened that has not happened before or has taken me by surprise and destabilized me? Well, let’s see… doubt and financial insecurity…disappointed currently by unrealized expectations…disappointing news and loss of some opportunities considered integral to my ongoing plan of achievement… questioning my overall achievement plan as to its viability…my new diagnosis of glaucoma and celiac disease and a notice that a dear and long-time friend has cancer. Well, let’s see…I guess if I were to be my own counselor, I could see why I might feel stymied and “dead in the water” (maybe an unfortunate use of metaphor). But these stresses are part of life. To avoid them is to avoid life itself. There will be thwarted goals. There will always be inner questioning. There will be unfortunate news. Well, I have discovered some things, but still I have no definitive answers. I owe myself 100 bucks for professional consultation. Pay up. This is a cash business. And, not so dang amazingly, I do feel better even though there was no resolution. Life is like that sometimes.
Pain level is 7.5
Pain level is 7.5 this a.m. – meds don’t help much some days. It’s a beautiful sunny day down by the beach. I’m sitting here listening to the Beach Boys, remembering my innumerable long walks. My fibromyalgia and arthritis have robbed me of that ability. I’m chair-bound most days, unable to walk unassisted. I may be robbed of my mobility but my memory is darn good. I have the benefit of revisiting those gloriously adventurous, almost endless days of walking all over the world…from one side of Paris to the other, from Sacre Coeur to Napoleon’s Tomb…loving every step on the road less traveled, never passing the same sight twice. And even here, at low tide, I remember walking the firm sand, picking up beach glass, leaving footprints that marked my shoreline progress. Some days I’d walk on the beach from one community to the next. I’d wander all day and forget where I parked my car, then I’d have to call someone to pick me up. Do you wonder why I didn’t just turn around and walk back the same way I came? Well, here’s my rule: Never go back. If you can make a circuit that takes a new route, one you have not taken before…that’s the way to do it. But never go back. The nonwilderness hiking rule is hard and fast…never backtrack. Backtracking is seeing again what you’ve already seen. It’s not a challenge. Life is short and backtracking is mostly a waste of consciousness. When abiding by that simple rule, what is the worst that could happen? Maybe you’d have to stop for coffee and wait for a bus? But never, ever go back. However, right now, as I look at all the joggers, walkers, strollers, and bikers passing by, I wish I had the ability, the option to go back…to backtrack to the days of endless exploration and discovery. A minute ago, when I began reminiscing, I thought those memories were a good thing. But now, I find myself resentful. I’m envious of those people parading in front of me. Seeing their freedom, I’m jealous and I long for active days gone by. I notice their sandy footprints knowing these are impressions I can no longer make. I remember and I feel twinges of tremendous loss and sadness. I find going back in my memories has suddenly become painfully difficult. This kind of backtracking, this recalling what you no longer can do, is not at all uplifting and not the least bit positive. I think, “What I lack is perspective”. Yet just now I glance up from my realizations and there directly in front of my car is a young man in a motorized wheelchair. With a noticeably firm grip on the steering knob, he carefully maneuvers his way across the street. He is obviously vulnerable to every hidden rut and daunting curb. He’s paying intense attention, concentrating on getting himself safely across to the other side. His perspective is in this moment…not yesterday or tomorrow…but right now. What am I paying attention to? Where is my concentration and perspective? Is this young man wasting his precious moments in resentment while traversing the street? Perhaps he’s never been able to walk, much less wander the cobbles of the Champs Elysees. I glimpse him at the bus stop ahead chatting and laughing with the others waiting there. How dare I be resentful after having such an active, full, and carefree life. I have no reason to be sad or grief-stricken. So many have never had the incredible opportunity to experience what I have. If I let my focus on my memories drift from fond and free to become a source of resentment and grief, I have lost the perspective of gratitude and the joy of today’s grace. Beneficial recollection is a matter of perspective and gratitude is the gift that keeps on giving. In my book, “Just Because You’re Suicidal Doesn’t Mean You’re Crazy”, I talk about making everyday choices on what to focus. It’s easy to lose focus on what you have and thus drift towards what you don’t, predisposing depression and in my youth, suicidality. I realized over time that I must make this important decision every day. When it is so easy to return to resentful remembrance perpetuating pain, both physical and emotional, it becomes incumbent on me to purposefully decide to do the opposite instead. When we realize we have lost our perspective, then backtracking to grateful memory is not only positive but an enhancement of consciousness. I can make the choice, like this young man today, to keep my grip firmly on my steering and my perspective gratefully on navigating today in a positive way.