You stand in front of your mirror and carefully examine every part of your body. You appear normal, you do normal things, you can even continue most of your activities of daily living. And, you think to yourself, so that’s why my family and friends don’t believe me. Maybe I am normal ofter all. What’s wrong with me?
One of the most devastating aspects of disability is the fact that any individual can look well, appear healthy, act healthy, and yet be ill enough to not be able to work. The emotional trauma of disbelief by family and friends takes its toll at a time when disabled persons need the support group closest to them.
Think about how devastating it must be to live through each day knowing people believe you are “faking”; and, at the same time your disability insurer is thinking the same thing. While the sense of betrayal carries its own emotional trauma, individuals usually turn inward and blame themselves for not “looking more disabled than they appear.” Then, the fear arrives, “What do I do now? If my insurer sees me it will not believe I am too ill to work.”
I hear these things mostly from insureds and claimants who are disabled and suffer from severe pain. PAIN is one of those things where one person’s stress headache is another’s awful migraine. The effects of physical (and even emotional) pain are ever-changing, and are experienced differently by the individual. There are no diagnostic markers, or objective measures of pain severity, and physician’s rely on patient reports of pain, backed up by x-rays, CAT scans and MRIs pointing out the severity of possible causes of pain. Still, there are no measures of pain severity and the phenomenon remains relative to the indivdidual.
By any standard, it is also true that no outside person can evaluate or judge the pain that another person is experiencing. A surgeon with severe back issues once told me that his family rejected him because they didn’t believe his pain was a bad as he said it was. In the end, his wife left him because she believed he was malingering. If it is true that there are no objective measures for the intensity of pain, it is also true that visible perceptions of how people should act when they are IN pain are also not reliable predictors of severity.
Disability insurers often find it difficult to evaluate disability based on reports of severe pain. This is why I rarely recommend “Pain” as a primary diagnosis since it is “subjective” and “self-reported.” The primary diagnosis should be the source or cause of the pain, which can be documented with test results and patient histories.
For example, a patient with severe radiculopathy and disc herniation shouldn’t report “Pain” as a primary diagnosis, but as a symptom corresponding to the Pain Scale from 1-10 backed-up by MRIs showing the source of the pain. Some insurers accuse insureds of being over medicated, which again is a myth.
Pain isn’t the only symptom that’s suspected for total disability. Early stage Parkinson’s disease, multiple sclerosis, depression, and HIV are also a few diseases that can prevent one from working and yet not be physically observable as a disability. The emotional toll of having to defend disability over and over again to others and attempting to prove the credibility of one’s disability is exhausting, and clearly counterproductive to wellness.
Over the years many people have shared with me how exhausting and unnerving it is when people they care about don’t believe they are disabled. Depending on the situation, I’ve recommended several “talk-backs” that address both the “unconcerned” person, and the integrity of the insured. For example, a person who scorns pain or disability should hear, “I’m sorry that you aren’t seeing or acknowledging my pain. However, my physician and I have worked very hard to provide me with a quality of life I can live with everyday. Would you like to help me with that? I’d love to have you as part of my support team.” Usually, a throw-back of this type will stop the criticism in its tracks, at least for a little while
In so far as insurance companies are concerned, insureds are not required to defend their claims beyond providing medical restrictions and limitations precluding the ability to work. It is wrong to continually try to justify disability to a claims handler; in fact, doing so is regarded as a “red flag.” Communicating “how bad” your pain is goes in one ear and out the other, it’s a loss of 5 minutes you can never get back.
Looking well and having a quality of life you deserve is always a number one priority, regardless of whether or not someone else feels or sees your pain.
