Lupus
Lupus is a chronic autoimmune disease that can cause pain throughout the body. It can affect the joints, skin, kidneys, heart, lungs, blood, and nervous system, among other organs. Because lupus looks different from one person to the next, it can be difficult to recognize, especially early in the disease. Someone with lupus may experience severe fatigue, joint pain, swelling, rashes, fevers, brain fog, and unpredictable flare-ups. Many of these symptoms overlap with those of other illnesses, making lupus easy to overlook. A person may be suffering intensely while appearing relatively well during a routine medical appointment.
That uncertainty can have serious consequences. Patients with lupus are sometimes told their symptoms are the result of stress, anxiety, hormonal changes, poor sleep, or other non-specific causes rather than a complex autoimmune disease. Because lupus is often invisible and its symptoms can come and go, patients may feel they have to prove they are truly sick before anyone believes them. The result can be delayed diagnosis, delayed treatment, and months or even years spent searching for a healthcare provider who takes their concerns seriously.
The consequences extend well beyond physical symptoms. Chronic pain, fatigue, and inflammation can interfere with work, school, relationships, mobility, and everyday life. When healthcare providers dismiss these problems, they don't just postpone treatment; they weaken the trust between patient and physician. That loss of trust can make patients less likely to seek medical care when their condition worsens. For people living with lupus, being believed isn't simply validating. It is an essential part of good medical care.
Sickle Cell Disease
Sickle cell disease is a painful inherited blood disorder caused by an abnormal form of hemoglobin, the protein in red blood cells that carries oxygen throughout the body. The abnormal hemoglobin causes red blood cells to become rigid, sticky, and sickle-shaped instead of flowing smoothly through blood vessels. These misshapen cells can block blood flow, triggering sudden episodes of severe pain known as vaso-occlusive crises. The disease can also cause fatigue, swelling, infections, organ damage, stroke, and other serious complications.
Unlike lupus, sickle cell disease is usually recognized quickly. The problem is not that clinicians doubt the diagnosis, but that patients are too often undertreated once they arrive in severe pain. Because many people with sickle cell disease require repeated emergency visits and strong pain medication, some encounter suspicion instead of compassion. They may be viewed as exaggerating their symptoms or seeking drugs rather than desperately seeking relief. That stigma can delay treatment, leave pain inadequately controlled, and make patients reluctant to return for care during future crises.
The consequences go far beyond unnecessary suffering. Patients who expect to be doubted may delay seeking treatment even when a pain crisis could signal life-threatening complications such as stroke or organ damage. Repeated experiences of skepticism also erode trust in the healthcare system and reinforce the feeling that patients must defend their pain before they can receive appropriate care. People living with sickle cell disease deserve a healthcare system that responds with urgency, compassion, dignity, and respect, not suspicion.
Complex Regional Pain Syndrome (CRPS)
Complex Regional Pain Syndrome (CRPS) is one of the most severe chronic pain conditions known. It most often develops after an injury or surgery, although the original injury may be relatively minor. Instead of improving as the body heals, the pain persists and may become much worse over time. People with CRPS often experience burning pain, extreme sensitivity to touch, swelling, changes in skin color or temperature, and difficulty moving the affected limb. Even something as light as clothing brushing against the skin can be unbearable.
Because CRPS often produces symptoms that seem out of proportion to the original injury, patients may struggle to convince others that their pain is real. There is no single blood test or imaging study that confirms the diagnosis, and the physical findings can change over time. As a result, some patients are told the pain is psychological, exaggerated, or simply impossible. Others spend years seeing multiple specialists before receiving a diagnosis, losing valuable time during which early treatment may have been most effective.
The consequences of that dismissal can be devastating. CRPS can severely limit mobility, independence, employment, and quality of life. Patients may withdraw from work, family activities, and social interactions because of relentless pain and the frustration of not being believed. While no single treatment works for everyone, patients deserve a healthcare team that recognizes CRPS as a legitimate medical condition and approaches their pain with compassion rather than skepticism.
Failed Spinal Surgery
For many people with chronic back or neck pain, spinal surgery is the last resort, and for good reason. It is always at least somewhat risky, usually considered only after medications, physical therapy, injections, and other treatments have failed. While many patients benefit from surgery, others continue to experience chronic pain (sometimes worse), or develop new pain, long after the operation. In some cases, the surgery corrects the underlying structural problem, yet the pain persists. In others, scar tissue, ongoing nerve injury, spinal degeneration, or other factors continue to generate pain despite technically successful surgery.
Patients whose pain continues after spinal surgery must sometimes face a different kind of disappointment. Having undergone a major operation in the hope of reclaiming their lives, they may instead be told that their surgery corrected the original problem and that nothing more can be done. Some are bounced from one specialist to another without meaningful relief. Increasingly, many feel that, because no clear explanation can be found, their pain is being questioned or attributed to mental health rather than real.
Living with chronic pain after spinal surgery can be physically, emotionally, and financially devastating. It can interfere with work, sleep, mobility, relationships, and nearly every aspect of daily life. Additional procedures, repeated medical appointments, and the uncertainty of not knowing whether the pain will ever improve only add to the burden of patients who have already endured years of pain and unsuccessful treatment. These patients deserve healthcare providers who recognize that persistent pain after spinal surgery is a real and challenging medical condition and who remain committed to helping them achieve the best possible quality of life. Unfortunately, opioid phobia regularly prevents this, as pain management physicians are scrutinized more than ever.
Bottom line
Although lupus, sickle cell disease, CRPS, and chronic pain after spinal surgery are very different conditions, they share a common challenge: patients may encounter skepticism, delayed treatment, or have their symptoms minimized. Chronic illness is not always visible, and pain does not always appear on a scan, blood test, or other diagnostic study. That does not make the suffering any less real.
On Chronic Disease Awareness Day, we recognize the millions of people living with chronic illnesses and the daily challenges they face. Good healthcare begins by listening to patients, taking their symptoms seriously, and providing timely, compassionate care. No one should have to repeatedly prove that their pain is real before receiving appropriate treatment. No one should have to repeatedly prove that their pain is real before receiving appropriate treatment. They deserve better
Josh Bloom
Director of Chemical and Pharmaceutical Science
Dr. Josh Bloom, the Director of Chemical and Pharmaceutical Science, comes from the world of drug discovery, where he did research for more than 20 years. He holds a Ph.D. in chemistry.
