Living With Chronic Pain/Invisible Illness
Living With Chronic Pain/Invisible Illness
A whopping 20% of Americans live with chronic pain, often daily—a conservative estimate, more accurately 23% live with with significant persistent pain which increases to approximately 30% in older adults. Not only is this a beast to live with, the invisible nature of it adds a layer of distress that’s psychological. With the word “psychological,” people often mistake it for a psychosomatic condition when in fact, chronic pain is a bona fide nervous system disease state, where the wiring has gone awry.
People who live with this disease suffer first, with the actual pain. Secondly, they’re moving around in a world with people who look like they do, silently feeling pain and going through the effects of their illness, but others (through no fault of theirs) can’t acknowledge their reality, and see through them. The nature of this: invisibility, is ferocious. It’s akin to rubbing salt in an already open wound, and the salt stings, smarts, and after years of relentless pain, festers a hole in the person’s metaphorical heart, results in feeling isolated from others who don’t go through this.
Isolation is not the same as feeling lonely. Theoretically, it’s possible to be isolated and yet feel sufficiently okay and not lonely. It’s usually easier for introverts (due to less need for interaction with others as fuel); extroverts, and ambiverts, with a higher need for others, often feel more cut off. It begins with having to organize, plan, and constellate his/her social plans around their physical symptoms/pain and or side-effects of medications, etc. People often find themselves in the position of having to cancel commitments due to unexpected pain. In fact, the unpredictability of pain conditions is one of the hardest things to live with, e.g. someone might make a plan, albeit apprehensively but with hope, only to wake up the day of, and find their pain is out of control. What to do? Grit teeth and silently bear it? Or bow out? Either way, it’s a lose-lose scenario because neither option is great.
On the face of it, this might not seem like such a big deal, e.g. “So what’s the big deal … just cancel and go next time … “ From the perspective of the person who lives with chronic pain, they’ve been dealing with not just days or weeks or months, but often years and decades. It’s a terrible way of life. This is the only life they’ve known. So cancelling an engagement is the default setting. It’s not the exception; it’s their normal. This inevitably leads to a spiraling sense of deep shame borne from judgements about themselves, e.g. their questioning why they have the pain (rather than their friends, neighbors, family, etc.), and in so doing, they’ve entered the dark cave of comparison. It’s a rabbit hole of feeling of not being good enough, or worse: a sense of self-blame for their pain, e.g. that somehow they’ve brought this upon themselves. Layers upon layers of self-judgement. One of the most psychologically pernicious things is when the person thinks their pain is them being punished for doing “bad” things or not being a “good enough” person.
As a result of continually having to bow out of engagements or being no shows, over time people withdraw. This is an effort to protect both themselves from getting their hopes up and having them be dashed, and also to protect others from disappointment.
Medicine is much better nowadays at taking patients’ claims of pain seriously, at according them respect, not doubting nor questioning with suspicion. But it was not always this way. Older adults, especially women, who’ve been through the medical system have been at the mercy of the patriarchal establishment, learned the hard way that when physicians have not known the causes nor how to treat, have resorted to doing the worst medical practice: to overtly or covertly blame by making causal attributions that simply aren’t true nor helpful. The philosophical tenet to ‘first do no harm,’ goes out the window when ego is threatened. Pain cannot be objectively measured in blood tests nor read on imaging reports. Doctors rely on subjective self-reports, which is highly variable. This requires that physicians trust the patients’ sense of the pain they can tolerate and whether it crosses a threshold requiring intervention. When physicians invalidate and minimize, this sows seeds of when pain patients later turn around and do it to themselves. They’ve internalized judgment. This is what we term an “iatrogenic effect:” while well-meaning, the practitioner causes ill effects.
In our age of New Age healing, where crystals cure all, people are fond of making grand omniscient proclamations. An acquaintance once told me she thought her niece’s thyroid cancer was caused by her being “too angry.” Wow. Just wow. The is vicious and ignorant. The damage is beyond. It’s bad enough this person is undergoing a life-threatening illness, but to be told it’s her fault. It’s grossly insensitive, unfair, and most of all, patently unhelpful. This is not a one-off, it represents what we desperately want to believe. That we have control and influence over our lives, and if we don’t, surely we can take the bull by the horn, make a u-turn and change our present, future, and destiny.
This is the dream—that we have great agency and locus of control over our lives. It’s agony to believe we can do our best, but still we cannot bend and contort the future to our will. We don’t like believing we are helpless. We must have power. Otherwise feeling powerless is like dying. This is all poignant because often the chronic patient simply needs to be validated in the reality that they live with. They want to be acknowledged on their own terms—without judgment, without advice on how to get better, with no pressure.
It’s a gift to feel accepted, to be truly unconditionally accepted and to be given empathy, to be offered compassion. Chronic pain patients usually find themselves lacking, struggle with feeling their identity bound with contributing to society, conflicted with doing versus ‘Being.’ Other people coming forward to forge a connection, to offer support is a balm and salve to the invisible suffering.
If you’re reading this and can identify with it for yourself, or know someone who fits this way of living, please know millions of people share your reality. You are not alone. We have support groups, online communities, in hospitals/clinics, in-person, and on social media platforms. For you to know that these feelings are normal, and you’re not alone in it—this is validating and hugely relieving.