Knowing who to call

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