The Process of Proving I am Sick

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The last few months have been rough. If you follow me on social media, then you know that I have been going through a brutal intake interview for In-Home Supportive Services, which provides me with caregiving hours. You may also know that the intake interview did not go well. 

I’m in the process of appealing the outcome, and once things settle down, I will have more to say. But for now, I want to discuss something that I was reminded of during this process. 

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 exceeding number of bad days. 

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 people, mainly idiots like Rush Limbaugh, 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. 

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.

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.

That will be a good day.

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6 thoughts on “The Process of Proving I am Sick”

  1. I had similar experiences, after I got ME over 20 years ago. In order to get private long-term disability insurance, I had to prove I was ill. First, I had to get a psych evaluation, which included an hours-long IQ test. Actually, the psychiatrist giving the test felt bad for me, telling me the insurance company just didn’t know how to deal with people like me. I relapsed after that evaluation. Then, the insurance company required me to get a 2-day physical evaluation, which included lifting weights, walking around, and other strenuous activities. Again, the guy giving the test felt bad for me, but encouraged me to persevere, which I did. And, finally–yes, the same insurance company–had one of their agents show up at my house, unannounced, to verify that I was really ill. I had bruises up and down my legs due to my illness. But I could tell, from questions that were asked, that the agent thought perhaps I was being battered by my husband. A husband, I might add, who’s always been incredibly supportive. I did end up getting the insurance. They tried to bribe me with a low-ball one-time payout at one point, but I refused. The whole experience was incredibly demeaning and made me more ill. I keep hearing about people accusing applicants for disability insurance of trying to game the system to get money for an imagined illness. But, really, it’s the other way around. The system is gaming us.

    1. JamisonWrites.com

      That sounds terrible! I’m sorry you had to go through that. The disability benefits are definitely all out of whack. As you said, the system is gaming us.

  2. Jamison,
    I am moved by your story (which I learned about from your blog and your newsletter to readers.

    My wife, Lynn, is a 100% disabled veteran of the US Air Force and US Navy. She fought for years to have the VA recognize her fibromyalgia as legitimate, and separate from arthritis. She lives with constant level 7 pain. In 2017 she had a heart blockage and underwent a triple bypass. She has stents and also has small vessel disease. Since then, it has been a constant effort to control her blood pressure, relieve pain, treat anxiety and PTSD, and gout. She has now added shingles and diabetes to her list.

    Recently we applied to the VA for a program which provides compensation for disabled vets in-home family caregivers (me) in order to pay for supporting people. After many false starts ( it IS the VA, after all) we completed the paperwork and submitted the request. After that there were two telehealth interviews to “prove” she was sick enough. We were turned down eventually on the grounds that she still had enough mobility to feed herself from a tray and do personal hygiene.

    You are not alone, my friend. We are at the mercy of insurance companies and government bureaucrats who can only follow the laws passed by legislators and enacted by actuaries. Take heart and heal.

  3. You’re a frigging superstar Jamison. You speak for so many people, and write with such brevity and eloquence. In spite of the severity of your illness you consistently put your heart on the page. It’s vital and inspiring and all of it without one scintilla of ego.
    I truly hope your health lasts through this latest travail and that you get what you need to pay the bills, and that then you can finally breathe a few sighs of relief and put all your energies back to focusing on your health. best of luck 🙂

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