Anyone with a chronic illness knows that health can be more variable than weather in the British Summertime; there will be glorious days, there will be gloomy days, and the rest of the time you won’t be sure if you need a jacket or not. Outside of chronic illness communities however, most people seem surprised by the notion that health is not a constant state, but fluctuates from day to day, or even hour to hour. So, why does it fluctuate so much?
Firstly, while everyone’s state is somewhat governed by external stimuli such as temperate, rest, and food & drink, those who are long-term sick often feel these states more acutely. Shivering with the cold is only possible if your muscles have the high amount of energy needed to contract and relax rapidly, and swelling up with heat as blood heads towards the skin to cool off can be downright painful if you already have chronic pain. Not being able to rest as needed often results in conditions flaring up and relapsing rather than just feeling more tired than usual. What we eat and drink is obviously important for everyone, but when and how much is consumed can be the difference between someone with a chronic illness being able to go to work, or collapsing from exhaustion for an issue with blood pressure and glucose.
There are also additional stimuli that can cause the health of someone chronically ill to fluctuate. Anyone with a condition like PCOS or endometriosis will acutely feel the impact of monthly hormone cycles, even more so than someone in perfect health. Stress might make someone healthy feel the need to step away from whatever is causing the issue to cool off, but can result in emotional breakdowns for someone already struggling with their mental health. Light and sound can overwhelm the senses, inducing confusion, panic, and horrendous headaches. A small cut in need of a plaster for one person could result in excessive blood loss or a serious infection for someone especially vulnerable.
Despite all of these factors and many more causing fluctuations in health for the chronically ill, it is somehow still expected that the same person would display the same symptoms day in, day out. If any change of health is expected, the change is predicted to be linear, with either health being expected to decline until death, or improve until fully recovered. These expectations can actually cause a lot of problems for the chronically ill, especially for those where the disease is not visible on the surface, as accusations that they are faking their symptoms based on fluctuations in their condition are very common. I’ve certainly had my fair share of doctors dispute the symptoms I describe purely because they’ve seen me on a good day, and people have threatened to report me to government departments (who already have it documented that I can stand and walk a little) for “faking”.
Perhaps our idea of health as a constant comes from the experiences of people who have only ever experienced short-term illnesses, where the path to recovery is often linear. The voices of people with long-term illnesses are less likely to be heard, after all, simply because long-term illness makes it harder to speak up. Alternatively, our perception of health as a constant may come from the stories we consume, a common narrative trope being the sick person whose health declines until they drop some Earth-shattering wisdom shortly before kicking the bucket.
Either way, we could all do with being a little more mindful that what we see of someone with a chronic illness probably does not wholly represent their health overall, and that health is more of a rollercoaster than a train ride.