Thoughts on Chronic Pain from a Caretaker

Chronic pain is a largely misunderstood and societally inconvenient condition. It is obviously inconvenient for the sufferer, but it is also inconvenient to society and to the sufferer’s family, since the state of the sufferer and the precise nature of their experiences is very difficult to translate to others, which reduces their ability to empathize, treat, or correct as necessary. A broken leg, a torn ACL, or another purely physical problem can be understood using visual sense data and therefore empathized in some concrete way from the outside. Without a specific demonstrable mechanism or way to convey what is actually happening, many forms of Chronic Pain exist in a vague continuum between “fully psychosomatic” and “genuine,” and changing that perception is understandably very difficult. People should not be expected to move heaven and earth to accommodate a person when they do not understand the ailment – as people do abuse ambiguous health conditions or accommodative efforts for such things as service animals – but people should seek to verify what trained physicians have observed and concluded. Chronic pain conditions are similar to mental illness or depression, although those have better understood chemical causes that are more demonstrable and sometimes more treatable.

I have no medical training. I have read adequately on exercise physiology and nutrition at the level of a diligent personal trainer, but I am not claiming any expertise and only presenting the information and thoughts herein as a caretaker and as someone who has learned much from the struggle to adapt to my wife’s pain condition thoughtfully, compassionately, and effectively. I believe the lessons I have learned are applicable to all, because they are the same rules of life lived well for all, made more clear by increased stress on time, resources, emotions, and purpose. The position of caring for someone else who has lost some normal human faculty is a circumstance most people are unprepared for.

As a caretaker of someone diagnosed with “Chronic Regional Pain Syndrome” (CRPS) (formerly called “Reflex Sympathetic Dystrophy” [RSD]) about two and a half years ago (although her symptoms and suffering goes back more than a decade) at the time of this writing, I have struggled with a predicament that I believe is in common with many unheard voices: how to best care for a person whose pain you cannot feel and cannot truly understand, yet without infantilizing them and still treating them as a functional human being, capable of aims, accomplishments, and with the same powerful human spirit that can conquer so much when the appropriate sacrifices are endured and the proper approach is taken.

Chronic pain sufferers are often given characterizations that change their essential humanity by going too far on either direction of a spectrum of behavior. There are two primary errors in dealing with sufferers.

One, some outsiders perceive their condition as a set of psychosomatic self-victim complexes that somehow manifest or amplify physical pain (sometimes in a way to create a sort of recognizable identity for themselves). These types of outsiders sometimes voice an observation that “everyone has struggles and everyone suffers,” or “everyone has wounds.” In a majority of cases, they might well be right. And certainly, regardless how much the person suffers in a way that is outside their ability to control, the solution is not to wallow in it or to dwell on their suffering “rank” among others. A sufferer should not be allowed to convince themselves that they are wholly separate from humanity and their suffering represents something so distinctly bad that they deserve special treatment. A statement my wife heard quite a lot from physicians which was surprisingly stressful to her was “I’ve never seen this before,” or “You’re too young for this, there’s no way,” or instances where the physician diminished the possibility of a genuine pathology or set her by herself because of some factor or other that seemed to fly in the face of a reality of suffering. Emphasizing the uniqueness of a chronic condition doesn’t seem helpful. Uniqueness can be the same thing as loneliness.

The reality of their experience should be accepted (adequate testing to rule out attention or drug-seeking behaviors is obviously good) with an immediate pivot to what they desire and what they can aim at. Drug treatments can certainly help, but they can quickly become a crutch and their effectiveness can dim very quickly. As they are with any other human being, conversations should be the aspirational goals they can progressively accomplish to prove to themselves that they can be valuable and powerful in this world – the same as any other human being. They should also avoid talking about what the sufferer cannot do.

The “buck up” and “suck it up” relational approach to a genuine, severe sufferer is warranted at times, but in excess or in the wrong spirit can convince a person to constantly question the reality of their experience and reinforce their observation that no one really understands them. A person who is relentlessly positive, upbeat, and strives bravely against pain or mental illness, yet is still told they experience pain because of a victimology is being told that their experience is so unique that people cannot help but confuse it for something entirely different. Human beings have a better sense of reality than we are led to believe on social media, and the undeniability of their suffering contrasted with others’ inability to admit that at least some of it is intrinsically physical and out of their control can be very hard to fit into a mental frame.

Depression is the stalking threat that can put a person into a powerful downward spiral out of which they may not genuinely recover, and denying the person’s experience can isolate them and encourage depressive tendencies.

Others still create a super-victim of the person and praise them relentlessly for their courage, even if the sufferer is being a complete pain to those around them and demanding special treatment at every turn. The sufferer might utilize their condition to impose their will upon the world around them because it grants them a false feeling of control or influence or ownership of their circumstances. This can end up isolating them, as humans are loathe to be manipulated and, again, few are as dumb as we are led to believe by social media. We instinctively know when people are being petty and manipulative and using their victim status as a crowbar to pry their way and impose their preferences. This flawed approach is similar to praising a child too much. It destroys the ability of the child to struggle against resistance and accomplish genuine feats and build genuine self-confidence. Payoff for effort should not always be easily gained, and as with a child, effort should be gradually stretched out so the person can develop into a person who can strive against greater levels of resistance as a fully functioning adult is expected to do.

Most chronic pain sufferers across diagnoses are women. This is as expected, as women tend to be higher in negative emotion. Their situation is uniquely precarious, as they are also more clever at using indirect means such as physical beauty, affection, or at times victim status to receive gifts or attention. Because of their negative emotionality, they seem more capable of exacerbating existing pain conditions through anticipation and spiraling, like a self-fulfilling prophecy. Women also tend to be more social and develop unhealthy co-dependent relationships more readily. I have theorized that having weaker connective tissues and weaker physical structures, along with women feeling less of an inclination to physical exercise contributes to negative outcomes, given exercise’s very powerful and proven antidepressant effects. Female caretakers should avoid placing too much of their identity in the fate and condition of the sufferer.

Male struggles with chronic conditions have unique risks, as well.  Men are less inclined to seek out help, and more inclined to self-immolation than admitting weakness, asking for help, or dealing with the prolonged efforts of seeking pain resolution when initial or secondary efforts fail. Older men also tend more strongly to suicide. Male caretakers should avoid becoming isolated and ensure they have a support system and a vibrant career or personal pursuits that maintain their sense of self regardless of the state of the sufferer. Co-dependence in a caretaker causes both sufferer and caretaker to drown.

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