The Hidden World of Chronic Pain
From 2021
Terrifying, confusing, frustrating, debilitating, inconvenient. There are a lot of ways to describe chronic pain. The words one uses will vary depending on their individual experience. No matter what, it’s hard to explain to people who don’t experience it themselves. When they feel pain, it usually makes perfect sense: a fall, an accident, stubbing a toe, a papercut. For those of us with any chronic medical condition that causes pain, we can be lying down in the most comfortable position and suddenly experience pain without knowing what triggered it.
I think one of the hardest things those of us who live with chronic pain will experience is when someone thinks we’re lying or exaggerating. No, usually you will not be able to see physical proof we’re in pain. We might even be laughing and having a good time while trying our best to ignore physical pain because we don’t want it to interfere with our lives. But it still does.
We learn our limits, triggers, and boundaries surrounding our condition. We hope people will try to show us understanding if we cancel plans or realize a task or deadline is too much for us. Because we are dealing with symptoms nobody should have to experience, and we shouldn’t have to push through it all of the time. That’s too much to ask of anyone.
There are a lot of things I wish people outside of the chronic illness community knew about. A lot of us have multiple conditions. One autoimmune disease puts you at risk for another, if not several. If someone has multiple conditions, that doesn’t mean they’re lying or a hypochondriac. So if we have a new health problem, we have to figure out if it’s something that happens to everyone, a symptom of our already diagnosed condition, or a new health problem. Sometimes doctors don’t believe us — they are prone to the same biases the rest of the population has. The term for this is “medical gaslighting” and it can be very dangerous because it makes it more difficult to get treatment. Some of us have more trouble finding the right treatment than others, so a diagnosis doesn’t mean that person will never be in pain. We find what works for us, and we tend to get a lot of unsolicited advice, often from those who aren’t living with chronic pain themselves. Just because a treatment or diet worked for someone you know doesn’t mean it will for all of us.
Chronic pain is a hard thing to experience. It’s unfortunately made even harder by a society full of people who don’t understand what we’re going through and may be insensitive towards our struggles. I do feel like thanks to the disability rights movement and the advocacy done by chronic pain patients, we are moving in the right direction. I’m grateful for all the people living with chronic pain who take the time to advocate for themselves and others and offer support, both online and in real life. Nobody should have to go through this alone. I just hope we are shown more understanding from others in the future.