Everyone has the possibility of being thrown into poor health at any moment. Good health is assumed and taken for granted. The line between good and bad health is thin. Chronic illness has forever changed the trajectory of my life.
Chronic illness, as defined by the CDC, is an illness that lasts more than a year and requires daily management or limits everyday life. It is widely underreported, misunderstood, and misrepresented. There are countless inadvertent assumptions made about those people whom this definition describes. Here are five truths from someone with firsthand experience.
First, chronic illness is serious. Everyone’s experience is different. But, in keeping with the definition, it requires constant monitoring, medicating, and managing. Chronic pain and fatigue often accompany chronic illness. Chronic illness interrupts life at the most inconvenient times. Many students need to graduate late or take a year off school while they address their health. Besides dealing with the physical aspect, their experience is doubted and questioned by parents, medical staff, friends, and school staff. No one wants to believe that their child is suffering as deeply as they are. This skepticism only adds to the person’s load. Self-advocacy is exhausting. It is maddening to both be in pain and have to convince people of that pain. Finding doctors willing to listen and help takes a lot of trial and error.
Getting diagnosed with the correct chronic illness is not simple or easy. Often, it is a years-long process. Patients are dismissed as exaggerating the truth or dealing with a purely psychological issue. Because these diseases are rarer, doctors are slow to diagnose them. Coming in because of gastrointestinal pain and a fever? It could seem like several more common issues when, in reality, the patient is struggling with Crohn’s disease, which affects the small intestines. Chronic illnesses love to hide, distract us with other problems, and lay in wait. Everything else must be ruled out. I saw five doctors before I received a diagnosis. I had to get more than five rounds of blood testing and multiple exams. My story is not even close to the worst one. Some people have multiple hospital stays and emergency surgery before the issue is found.
Every person’s experience with chronic illness is different, even with the same disease. Many chronic illnesses have a large number of symptoms, not all of which are experienced by each person who has it. For example, POTS, or postural orthostatic (upright) tachycardia (fast heart rate) syndrome, involves fainting but is not a requirement for diagnosis. The number of conditions an individual has also affects how they experience said conditions. Managing one condition might make another worse, forcing someone to choose in which way they want to feel better AND worse. There are not always good or easy choices when living with chronic illness. Take medication for muscle pain and deal with the fatigue it brings on, or live with the pain. Show up for a friend’s birthday party or be able to attend class for the whole week. Every aspect of life is changed, from diet to ability to work.
Chronic illness can be disabling. Disability is often mistakenly believed to be an all-or-nothing game but, in reality, is far more complicated. Either you are completely disabled and have no mobility, or you are healthy. The ability to work, engage in social life, and move around all exist in spectrums. Not everyone’s mobility needs the help of a wheelchair; they just need a cane. Someone might have complete mobility but lose tons of friends because of frequent migraines that keep them at home. Someone might attend school full time, but they miss class and need to ask for frequent extensions. Disability can seem invisible, especially because so many chronically ill folks attempt to hide their sickness. We are consistently faking being well rather than faking being sick. For chronically ill people, recognizing their struggles as disabling can be validating. Choosing to identify as disabled is a way of accepting themselves, health issues, and all.
Finally, here are some common mistakes to avoid when talking to chronically ill people. Some people are more open about their illness than others, but the majority of people do not appreciate unsolicited questions. A healthy person would never casually be questioned about their medical history or body. Unsolicited advice or comments are also unhelpful. Chronically ill people do not need your advice because they have already tried everything to get better. If yoga, drinking more water or doing a certain diet worked, we wouldn’t still be sick. Half of living with chronic illness is dealing with the symptoms, and half of it is dealing with ableism.
Chronic illness is complicated, but a little empathy goes a long way when trying to understand your neighbors’ experience.
Article written by Tegan Merrick.