Prognoses and potentially toxic situations
Due to significant improvements in medical science, living and working with autoimmune disease(s) is now often an option and expectation. For example, in the past Multiple Scoliosis had no effective Disease Modifying Therapy (DMT) options to prevent disease progression until the mid-1990s. By that time, the disease status for many Multiple Scoliosis patients had progressed too far for any daily medications to be effective. Individuals in this category were left with two options: adjust their work life to fit their deteriorating health or go on Social Security Disability Insurance (SSDI) and, by effect, retire.
Most autoimmune diseases are, for the most part, proverbial invisible illnesses, meaning the disease’ symptoms are not recognizable during daily life. As a result, afflicted individuals are often treated like any other individual in the workplace, an outcome both positive and negative. For example, if one breaks their arm or leg, there is usually a visual sign, such as a cast or sling but, with an autoimmune condition, there is often no outward sign of injury or disability. If there are no outward indicators of an illness or condition, others may not and often do not recognize the individual to be in pain or discomfort. However, to the individual, what is happening internally can be quite different from what is easily visible.
Autoimmune disease sufferers can experience symptoms including, but not limited to, stress, pain, bladder incontinence, and extreme fatigue and, when these symptoms are not overtly visible, others may purposefully or inadvertently invalidate or discredit the patient’s experience. This can lead to the patient working beyond his or her physical comfort level, trying to meet employment expectations of someone with no medical conditions. In some cases, the affected employee may choose not to disclose the medical conditions for fear of negative reactions. In other cases, the affected employee’s personal physician may not submit documentation of the condition as he or she feels uncomfortable documenting a condition without overt indicators, images, or diagnostics; this denies the affected employee the medical validation necessary for Americans with Disabilities Act (ADA) accommodations, Family Medical Leave Act (FMLA) benefits, and more.
Without indicators, diagnoses, or documentation of the “invisible” condition and working under expectations of non-disabled productivity, this can lead to burnout or worsening of the condition. Similarly, if the employer creates doubt of the condition and either requires work beyond the employee’s ability or seeks to ‘discover’ the employee’s health condition, work functions may aggravate the patient’s condition or, seeking to validate an ‘invisible’ disease, tread on dangerous Healthcare Insurance Portability Accountability Act (HIPAA) territory by requesting private medical information, not recognize Americans with Disabilities Act (ADA)-related needs, or otherwise promulgate a toxic culture where autoimmune sufferers feel devalued, distrusted, or even accused of malingering, compensation fraud, drug addiction, or other negative behaviors. Several affected employees have spoken of situations in which their employers have, not believing the employee has a medical condition, sought to access the employees’ medical charts, asked inappropriate questions of the employee and/or the employee’s physician, requested HIPAA waivers to access information, or otherwise treaded upon the employees’ privacy.