I can seem a cold person, lonely, indifferent and devoid of feelings. Not so: I had to build an armor. Because surviving physical pain has been complicated. So complicated, that sometimes I don't know where I ended up.
It was even more complicated to survive the sense of inadequacy that caused me to fail to heal, despite all my efforts.
Up to about twenty-two, I don't think I was fully aware of the pain. There was, but it wasn't scary. It has started to be so since the summer of 2003, due to the combination of a number of factors, which I can now clearly identify (psychological, social, environmental, biological), but which at that moment completely eluded me.
In that summer, the pain, and a series of absurd symptoms, began to eat everything. I am no longer just talking about musculoskeletal pain and allodynia, but rigidity, sleep disturbances, stubborn headaches, tinnitus, irritable bowel, alterations in the perception of body temperature, tachycardia, allergic symptoms, dizziness, confused head. I felt like a crazy fly in an upside down glass. At that point I, already a loyal customer of countless physiotherapists, started my tours with doctors, who invariably resolved themselves in trips from shrinks or in bankruptcy treatment and consequent iatrogenic damage.
My pain and my "related" symptoms did not go away as planned, not as I expected, and not even as doctors, physiotherapists, osteopaths, chiropractors and shrinks were expecting.
So, at some point, I became the problem. The problem was not the pain, or my symptoms, or the tremendous situation I was in, or the treatments that didn't work. It was not those who treated me that he had insufficient knowledge about the mechanisms of persistent pain. No. I was the problem. And I was told in the face. As if I were hostile to healing.
As human beings, we generally like to think we are prepared and empathetic, but I wonder if we ever really think about the power of words. Because words build worlds. And the ones I heard from health professionals, have shaped my world and my personality.
Looking back, it's no wonder I was so ashamed of having persistent pain. No wonder I felt guilty. Because everything possible has really been done to make me feel inadequate, not so much unable to deal with the situation as directly responsible for its maintenance. I'm not saying it was done deliberately, with the intent to harm, but the result is this.
It makes no sense to deny the complexity of pain by offending the patient, yet it is what happened to me. We are people with persistent pain, not bad people, lying, fragile, incapable, uncooperative, irretrievable, condemned to pain "because of us"; we live in terrible situations, we are forced to adapt to a "standard" with which, frankly, no human being would like to confront: I know that I often say, that I am repetitive, it is just that I want to enter into your head well. Living with chronic pain is not normal.
Considering how important language is for those suffering from pain, any health professional should be prohibited from using inappropriate terms, those that end up making us feel weak, guilty (you'll end up in a wheelchair, just learn to live with it, it's the worst that I've ever seen, you only have Lourdes left) or ineffective (the pain doesn't go away because you don't want it to pass, you're like this because of yourself), crazy (you're doing it too big, you can't see anything from exams). The collection can easily be expanded. These words take us away from healing, first of all. Secondly, they are inhuman. And, in our heads of people with persistent pain, they consolidate a world of ineptitude and guilt.
A key task in pain psychology is to help people learn to reframe their inner monologue so that it becomes more realistic and supportive. Being able to catch and recognize unnecessary or unrealistic impulses is not easy, but this skill underlies many successful adaptations to persistent pain. This insight forms the basis of cognitive behavioral therapy (a form of psychotherapy that aims to change unnecessary thinking behaviors), which plays an important role in helping people live with persistent pain. Living with persistent pain, living well with pain, is a fully achievable goal, I know from personal experience. I would add that it is fully achievable in a context in which the patient is not regularly kicked by health professionals, which still often happens.
If the patient is to be guided towards a greater awareness, the same must happen for those who take care of him: health professionals should motivate people with persistent pain, offering a language that must be carefully chosen in order to take more care of the patient, not to rub against him.
When a treatment doesn't work, it's human to find someone to blame. I would avoid accusing the patient, I have already said that. I would also avoid blaming the clinician (although in this case, I admit, it takes me an effort of mercy, I'm biased). Moreover, by accusing each other, we do not have much to gain. Surely a motivated patient is one step closer to success, and a health professional aware of their limitations will know how to motivate a person, respect them, pass on the right information, when to stop and pass the baton, or choose to inquire.
I don't think health professionals are naturally evil. I believe that once we assume that the "old way of proceeding" we are used to is deleterious, just as we look for new ways for patients to help them reframe their thoughts in order to live well with pain, it must be given greater emphasis on the importance of “communicating pain well” by health professionals.
If patients wish to be helped, I assume that health care professionals want to help, so if we interpret the patient / health professional relationship as a dialectic and not as a match between opposing teams, we could achieve something good for both categories.
There is hope for everyone.