Rebecca McCoy is a National Pain Report reader. The following article was a response to a recent article, Surprising Argument Over Chronic Pain Resiliency Erupts. We thought it was compelling enough to run as a “My Story.”
A little over a year ago, I was finally diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder.
I had been diagnosed (or misdiagnosed depending on which of my specialists you speak to, but my geneticist said I have both) back in 2005. That was seven years after the pain started, pain from a service-connected injury to my knees that led to my discharge from the Army in 1998. I have since developed a couple pages worth of associated diagnoses, many involving the spine, neck, limbs, heart, GI system, mast cell issues, and so on.
I learned in the Army to “suck it up and drive on.” I joined the Army after obtaining a Bachelors in Psychology, so I felt like a bit of an anthropologist, studying how people responded to extreme stress even while in Basic Training. I can’t tell you how many times my drill sgt swiped my notebook from me as I was taking notes on the classical and operant conditioning tactics being used to ensure my platoon’s cooperation. I learned to face adversity head on and either manage or overcome it. I learned from observation how to essentially “trick” myself into viewing things differently and making things happen. This has served me well as my pain has rapidly increased over the last few years.
HOWEVER. I have have worked in the mental health and disability field professionally for over 10 years now, and did a Master’s in Counseling Psychology. In addition to my own pain experience, I see that of my clients, too. According to my records, in this job alone, I have worked with nearly 850 individuals, most of whom are in pain of some type. I have seen and advised on all sorts of interventions, knowing many couldn’t afford medications, or TENS units, or even to keep their cell phones on so they could call the local free clinic during the two hour window of opportunity to *hopefully* set an appointment where they might be able to obtain some (ineffective but better than nothing) Motrin 800.
As a decades long student of personality, I think it plays a huge factor in how one copes with chronic pain. For me, my military training has been a blessing, as I consider myself to be a warrior and I will not let it defeat me. But even for me, there are days when it is all just too much.
None of my pain relief techniques are working well enough – this includes my TENS unit, warm baths, distraction, self-hypnosis (one of my go-tos, as I was taught it by a clinical hypnotherapist when I was first diagnosed with fibromyalgia), the Tapping method, changing my diet, taking anti-inflammatory and collagen building supplements, medication, clinical massages, visits to my chiropractor – which has been approved by my geneticist in the method my chiropractor uses and the fact that it does help me maintain my mobility with less pain – meditation, exercise when my joints will let me (you should see me working out while wearing nine braces on various parts of my body; it’s pretty comical, even to me, but it’s effective).
One of my biggest aids over the last few years has been my nightly gratitude journal. I don’t get a lot of support from my family and as folks with chronic pain often do, I tend to hide the degree of it from my friends, co-workers, and family anyway.The gratitude journal helps me to recharge without getting the outside validation I so desperately need. Some days I hurt so badly that I can’t think of anything. The number of days where I write that I am grateful for mint chocolate chip ice cream and Doctor Who are plentiful. But my personal goal is to fill the entire page (there are around ten blank item lines per page).
I start from the beginning of the day and work through it. Things like having the house to myself so I don’t have to expend energy putting on a mask, or can get dinner made throughout the day with nobody underfoot, taking breaks when I need it. If it’s supposed to rain but I got to work and inside before it did, that goes in there, as rain and weather/barometric pressure changes really affect my pain. If my husband or daughter gives me a spontaneous hug (which they are often afraid to do because I’m pre-surgery on one shoulder and having arm problems in the other, plus they don’t want to cause me pain despite me telling them I need the contact right now and will deal with the rest myself) and that spontaneous hug doesn’t cause me to wince in pain, that goes on my list. The fact that most days I can get by with half the prescribed amount of pain medication IF I combine it with other non-pharmaceutical pain relief methods – that too goes on my list. If something good happens at work, that goes on the list, like if a client actually thanks me sincerely for helping them find a job despite their disabilities when they had given up hope.
I also have things on my desk and surrounding me at home that help me to stay more upbeat. I’m by no means the “Perpetually Peppy” (my nickname) I was in college before all this started, but most of the time I can manufacture a decent smile in the presence of others when necessary. Unless I have a migraine. Then all bets are off. I have a few books from Amazon that have really helped. A book called “Fight On” and another called “You Are Doing a Freaking Great Job” – each has short quotes that help me to re-focus. I have other framed quotes on my desk and by my bedside. One of my favorites is from Ovid: “Be patient and tough: someday this pain will be useful to you.” This is true in my job as Vocational Rehabilitation Director for a multi-county nonprofit, but I am ALSO extremely fortunate that 1) I can still work, 2) I work for an agency where all the staff and clients deal with disabilities of various types and are very understanding and tolerant, and 3) my company and supervisor understand and allow me a lot of latitude in terms of accommodations just so long as the work gets done. I am blessed beyond belief in that regard. I am keenly aware that most of us with chronic pain are not nearly so fortunate, so I try my best to help everyone as much as I can, for as long as I can.
That said, I HURT. I hurt a LOT. And sometimes, even with all the tricks and interventions, my gas tank of resilience runs bone dry. So much so that I lack even the energy to cry from the pain. Uncaring medical personnel, impersonal insurance companies, the mental effort required just to try and take care of getting a simple appointment with a specialist, never mind work, family, household chores, all of that…. it just gets to be too much. So I keep a list of friends I can call and Facebook friends or other groups with support where I can just vent or sit quietly and listen/read to others. Some have it much worse than I do. For me, that helps put my own situation in perspective. If I call a friend and simply say, “Help. I need a pep talk,” then I can sit and listen to them tell me what I need to hear. Sometimes that recharges my tank of resilience enough to get up and do something that will put more fuel in it. Or sometimes I just have to go to sleep and hope I feel better when I wake up.
I think the message of “resilience” is good, but should acknowledge that the capacity for resilience varies from person to person and even from minute to minute. The tank does indeed run dry. But as one of the kindest doctors I ever had told me once, as I presented him with the report from my geneticist that confirmed my EDS diagnosis, “You know you’re going to be in pain for the rest of your life, right? There will be good days and there will be bad days. But even the worst days only have 24 hours. You just have to get through them. Tomorrow is a new day.” I remember that speech so clearly, word for word. It was the first time someone in the medical field (other than my geneticist) truly acknowledged my pain and acted with compassion. He then made some referrals, wrote a few prescriptions, put in a request for some knee braces, and so on. Without him, I would not be nearly as functional as I am now. And it was because he took the time to look through the report, look AT ME, and talk to me as a real person he would try to help any way he could. THAT built up my resilience more than anything else that day.
Yes, positive thinking is helpful, but sometimes more than positive thinking is needed. I think that’s where the conflict in opinions regarding resilience is coming from. The additional needs were not acknowledged by the presenter in the original article, it appears. And many of the responders who disagreed with that article have likely, in fact, tried that as a stand alone and found it to not work well or at all. Personalities differ, as I said, and some are more inclined to be optimistic, some more realistic. I agree with both sides of the argument. I simply think both sides need to try to see they actually need to meet a bit closer to the middle somewhere.