By Jamison Hill
Aug. 1, 2022
The last few months have been rough. I have been going through a brutal intake interview for In-Home Supportive Services, which provides me with caregiving hours. The intake interview did not go well.
Throughout the interview, I was required to demonstrate, both verbally and physically, how sick I am and the limitations that my illness imposes upon me. The irony of this is that in order to prove how sick I am, I had to make myself sicker.
I had to speak more than I normally speak. I had to move more than I normally do. I had to use emotional and cognitive energy that I normally reserve for other things.
The case worker performing the interview didn’t seem to understand my illness. I tried to explain that my illness is not a steady thing. It’s unlike disabilities that are the same from one day to the next. My illness varies from day to day.
On good days, I might be able to sit up and even take a few steps. On bad days, I’ll be lucky to be able to get out of bed and take my mobility scooter to the bathroom. Standing up is out of the question on bad days. And lately, because of the stress and exertion of this intake process, there have been an exceedingly high number of bad days.
A demeaning and detrimental process
What bothers me most about the process of proving how sick I am, is that it is demeaning to my psyche and detrimental to my health. If someone is sick, they shouldn’t have to prove it. And they definitely shouldn’t have to make themself sicker to prove it.
No one should have to put their illness on display like an exhibit at a science fair. But because many chronic illnesses are invisible — the symptoms are not clearly noticeable — we often have to do just that.
We have to push ourselves to the brink of exhaustion just so someone can catch a glimpse of what we’re going through. And then whoever is observing us carries on with their life while we are confined to bed for days or weeks, recovering from proving the legitimacy of our illness.
It reminds me of a story Michael J. Fox told in one of his memoirs. He was reflecting on a time when he testified before Congress about his Parkinson’s disease. And in doing so, he chose not to take the medications that improved his condition and made it manageable, more or less.
Because of this decision, his illness was on full display for the politicians in the room and the people watching on TV. His hands were shaking. His voice was wavering. It was scary, but that was the reality of his illness.
Because Fox had not taken his medication, some commentators said that he was putting on an act, that he wasn’t being truthful about his illness. In reality, he wasn’t just being truthful, he was risking his health for the sake of being truthful. He was giving people a glimpse at the worst of his illness and making himself sicker in order to do so.
More people believed me when I was sicker
Six years ago, I was completely bedridden — unable to lift my head off a pillow, too weak to eat or speak. Now my health has improved some, and I can get out of bed and speak for short amounts of time. But when it comes to proving how sick I am, I have never struggled more.
When I was at my sickest, it was easier to show others how sick I was. More people believed me because no one in their right mind would go without speaking or eating just so people thought they were sick. No one would stay confined to bed literally all the time just to get sympathy or money or whatever. But now that I can get out of bed, things are more complicated.
At first glance, it’s not always obvious how sick I am. But if you observe me for any significant amount of time, it’s clear to see that I am not a healthy person. You won’t see me eating in restaurants and going to concerts and seeing movies and watching ball games and swimming in oceans and hiking mountains and running on beaches and flying in planes and getting married and having children and doing all of the other things I would do if I were healthy.
All the proof I need
And that, my friends, is all the proof I need. I so badly want to live a healthy life. I want to be active. I want to move. I want to do everything I can as much as I can. And yet, that mentality is at odds with my illness. To minimize my symptoms, I must rest. I must ask for help. I must delay. I must do things later, when I am feeling better.
Even still, here I am, more than a decade into my illness and still having to prove that I’m sick. It’s a soul-crushing, pride-swallowing process that won’t stop as long as my illness exists. I hate it. But perhaps one day it will stop, and I’ll no longer have strangers judging how sick I am.
Jamison Hill has written about his struggles with myalgic encephalomyelitis and Lyme disease in such publications as The New York Times, The Los Angeles Times, and the Washington Post, as well as in his memoir When Force Meets Fate. This article is republished from his blog, Jamison Writes.
