To prove how sick I am, I had to make myself sicker

By Jamison Hill

The last few months have been tough. I went through a brutal intake interview for In-Home Supportive Services which offers me hours of care. The interview didn’t go well.

Throughout the interview I had to show both verbally and physically how ill I am and what limitations my illness imposes on me. The irony is that 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 usual. I had to expend emotional and cognitive energy that I usually reserve for other things.

The clerk who conducted the interview did not seem to understand my illness. I tried to explain that my illness is not permanent. It’s different than disabilities, which are the same from one day to the next. My illness changes from day to day.

On a good day I might be able to sit up and even walk a few steps. On bad days, I’m lucky to get out of bed and drive my mobility scooter to the bathroom. Getting up is out of the question on a bad day. And lately there have been a great many bad days due to the stress and strain of this recording process.

A degrading and damaging process

What bothers me most about the process of proving how sick I am is that it demeans my psyche and harms my health. If someone is ill, they shouldn’t have to prove it. And they definitely shouldn’t have to make themselves sicker to prove it.

No one should have to display their disease like an exhibit at a science fair. But because many chronic diseases 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 for someone to take a look at what we’re going through. And whoever is watching us goes on with their lives while we are bedridden 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 was testifying before Congress about his Parkinson’s disease. And in doing so, he chose not to take the drugs that improved his condition and made him more or less manageable.

Because of this decision, his illness became fully visible to the politicians in the room and viewers on TV. His hands were shaking. His voice wavered. It was scary, but that was the reality of his illness.

Because Fox wasn’t on his meds, some commentators said he was just acting out that he wasn’t being honest about his illness. In fact, not only was he honest, he risked his health for the sake of the truth. He gave people a glimpse of the worst of his illness and made himself sicker 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 somewhat and I can get out of bed and speak for a short time. But when it comes to proving how sick I am, I’ve never had it so hard.

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 leave without speaking or eating just so people would think they were sick. No one would literally stay bedridden all the time just for sympathy or money or whatever. But now that I can get up, things are more complicated.

It’s not always obvious at first glance how sick I am. But if you watch me for a long time, you can clearly see that I am not a healthy person. You won’t see me eating out and going to concerts and watching movies and watching ball games and swimming in oceans and hiking mountains and walking on beaches and flying on planes and getting married and having kids and all the other things that I do would do if I was healthy.

All the evidence I need

And that, my friends, is the proof I need. I want so badly 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 this mentality is at odds with my illness. To minimize my symptoms, I need to rest. I have to ask for help. I have to delay. I have to do things later when I’m feeling better.

Nonetheless, here I am, more than a decade into my illness and I still have to prove that I am sick. It’s a soul-crushing, pride-eating process that will not stop as long as my illness exists. I hate it. But maybe one day it will stop and I will no longer have strangers judging how sick I am.

Jamison Hill has written about his battles with myalgic encephalomyelitis and Lyme disease in publications such as The New York Times, Los Angeles Times, and The Washington Post, as well as in his memoir When might meets fate. This article is republished from his blog, Jamison writes.

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