The Pain of Invisible Illness
When people don’t believe you’re sick
On a recent Saturday morning, I rolled out of bed with a headache. When it didn’t dissipate after a coffee, I started to feel nauseated and dizzy, and then the pain worsened. I realized was experiencing a migraine.
I took my prescription medication for it and went back to sleep — strange for someone who’d just slept for eight hours — and slept all day, in pain. The medication didn’t kick in until after I woke up and took second doses at 5 p.m.
After that, I was groggy and exhausted. I tried to do homework, but couldn’t focus on the computer screen. Only the next morning did I feel well enough to type or do anything around the house. An entire day was wasted.
Yet, many people don’t believe me when I say I suffer from migraines. People tut, “It’s just a headache” and get offended if I have to cancel plans.
And from physically looking at me, it’s hard to tell that I have a migraine. I might be in bed with blankets over my head, complaining “It’s too loud” — but that’s about it.
A doctor can’t feel a migraine by palpation, or hear it with a stethoscope. The disease primarily affects women, and we really don’t know much about it.
When I mention my migraines to other women, sometimes they whisper that they, too, get them. “I’ve been to a neurologist, and he said there’s nothing they can do,” one said.
I was recently frustrated when I went to a medical presentation, and they described migraines as something that affects women because of stress. So be less stressed, the presenter seemed to be saying.
And I thought, okay: so why don’t men get them from being stressed?
The word “hysterical” comes from “hysteria.” Going back to ancient times, it was thought that women’s health problems could be caused by the womb wandering through the body.
Turns out, the uterus doesn’t detach and cause chaos. Shocking, right? But a lot of diseases common to women are still erroneously thought to be caused by stress, or imagined altogether: in other words, we’re just hysterics.
When it comes to reporting physical pain, women are often taken less seriously and given fewer painkillers. It’s even worse for people of color; black women are much more likely to die in childbirth in the USA.
But white men aren’t immune to healthcare bias — they account for 7 of 10 suicides in the USA. Perhaps public perceptions that they are strong makes it hard for them to ask for, and receive, help for anxiety and depression.
I’ve heard someone say about a man with depression, “What does he have to be depressed about?” As a society, we need to take mental illness more seriously.
Men are also more likely to have an alcohol use disorder than women. It can mask mental illness, but can have devastating health effects later, like Korsakoff’s syndrome, Wernicke’s encephalopathy, or liver cirrhosis.
I see similar problems with other diseases, like chronic fatigue syndrome or fibromyalgia. People are told to “get over it” and “deal with it.”
I’m reading through Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, by Abby Norman. The author had abdominal pain for years, had multiple ER and doctors' office visits, but was always sent away with doctors concluding she was just anxious, or imagining the pain due to her difficult childhood.
When she wanted her pain to be evaluated, not just managed with temporary pain medication, a nurse asked her if she liked being in pain.
She finally persisted in getting an exploratory surgery performed, and medical staff were stunned to discover she had an inflamed appendix.
The pain she had been describing, multiple times and to multiple people, was real. Who’d have thought?
People who haven’t experienced chronic pain may find it hard to believe someone. But when doctors dismiss pain or other symptoms, it can affect people’s quality of life — or cost them their lives.
Finally, in some areas, research is catching up. A new medication, erenumab (say that three times fast), has been described as a breakthrough in preventing migraines. It’s a monthly shot, and it’s expensive, but the cost may come down over time.
In the future, I hope other diseases are taken seriously and researched more thoroughly, so treatments can be available.