How Disability Programs Fail the Invisibly Ill

Our invisible illness and disability, like all others, needs to be better understood and properly accommodated for.

Anne Hartt
Jan 24 · 7 min read

I received a letter just before Christmas from my long-term disability (LTD) insurance provider. It was a request to complete a two and a half-page form to provide an update on my “condition.” They’re supposed to call every few months to check in, but I haven’t heard from them in at least six months.

The letter was dated December 4th, but I didn’t receive it until the 19th. I don’t check the mail very often and given the Christmas rush, I wasn’t surprised it was slow to arrive.

What was surprising was the deadline to have the form completed and returned within 60 days. As I reviewed it, my blood began to boil.

Before I proceed

Let me preface this post by saying for those who don’t struggle with a cognitive impairment, this may sound small and petty. When I was bitching about it to hubby this evening, he looked at me like I had six heads. He immediately went into solution mode, but that wasn’t the point.

The point is most people living with a chronic illness that impacts their cognitive abilities face unseeable challenges and struggles every time we need to complete a form, apply for any kind of government disability program or even organize ourselves to run a couple of errands.

What is cognitive impairment?

  • forgetfulness and memory problems
  • concentration difficulties and attention problems
  • poorer verbal fluency and verbal knowledge
  • difficulty in focusing
  • impaired judgment
  • impaired ability to perform simple cognitive tasks
  • slowed or altered speech and other speech problems

Also known as fibro fog, cognitive impairments related to fibromyalgia have been widely researched and documented. One study said these impairments mimic 20 years of aging.

Fibromyalgia is only one of many chronic illnesses that affect cognitive abilities. Multiple Sclerosis, Chronic Fatigue Syndrome, PTSD, psychiatric disorders (depression, bipolar) and Alzheimer’s to name a few.

Add to that, many medications used to treat chronic illnesses can impact cognitive abilities. Some antidepressants, benzodiazepines used to treat anxiety and sleep disorders, and certain pain medications all have documented impact on cognitive abilities.

So what does this have to do with the letter I received?

Let’s start with the deadline

  • If there’s a deadline, why wasn’t the letter sent registered mail so both the company and myself had proof of receipt?
  • Why send it in December? It’s the busiest time of year for postal service where the greatest risk for lost mail exists.
  • Why not follow up with an email or phone call to inform me a letter’s been sent with a deadline, and I should watch for it and call if it’s not received.
  • The deadline implies there are consequences if it’s missed, but they aren’t stated. It feels like a blanket threat.

As someone who lives with chronic depression and anxiety as part of my illness, these issues create excessive, undue anxiety, fear and worry. Why? Because I worst-case scenario everything. This means, I assume my benefits will be cancelled if I don’t meet the deadline.

I worry endlessly that even if mailed on time, there still exists a chance the right person won’t receive it, my benefits will stop suddenly and I’ll have to declare bankruptcy and lose my house.

Yes, I realize this sounds a bit dramatic. But that’s how my mind works no matter how many times I tell myself I’m being unreasonable. This shit keeps me up at night. After all, I’m writing this post at 3:22 am to try and get it out of my head so I can sleep.

The form itself

The instructions stated responses had to be answered in the space provided. The form consisted of nine questions ranging from information on recent medical tests and hospital stays, new health issues, type of therapies, medications, and a description of my daily routine. Each question had three to five lines for answers.

I don’t know about everyone else, but that’s not nearly enough room to truly document everything going on with my illness. Not to mention, if the continuation of my benefits are at risk (as may or may not be implied by the deadline), it’s imperative that I have adequate space to properly document everything.

I know what you’re thinking dear reader, why not just include additional information on the back? Because the instructions stated “in the space provided” and what if, by not abiding by the instructions, they’d have grounds to cancel my benefits?

I’m back to bankruptcy, losing my house and living on the streets trying to find a way to feed myself and my three dogs!

Again, I realize this sounds completely unreasonable, but I’m giving you a window into the mind of a person who’s not in charge of all their mental and cognitive faculties.

The final straws

There was no specified return mailing address. The letter was printed on standard letterhead, so the bottom of every page had the address of four corporate headquarters listed.

I took the obvious guess and mailed it to the one closest to me but, the point is, I didn’t know for sure. Again, this adds significant undue stress and anxiety.

How about including a self-address stamped envelope people? That way, there’s no confusion for we who struggle with the simplest of tasks!

The letter was signed by a case management administrator whose name I’ve never heard or seen before. I’ve never spoken to this person. Are they my new case manager? Do I have a new manager? If so, why? What happened to the old one? Is this person located at the headquarters closest to me or are they at a different location?

More freaking out. More stress. More anxiety. More panic.

What they did provide

Yes, there was a 1–800 number listed to call with questions, but I’m a crazy lady who experiences panic attacks at the thought of calling.

When I’m stressed, my cognitive impairments get worse, if one can imagine. Finding my words, expressing myself and sometimes even the ability to speak becomes a challenge. In response, more than once I’ve been treated with rudeness, impatience and condescension.

Because my disabilities aren’t visible, many people assume I’m high and wasting their time. Even hubby asks me often if I’m high when trying to talk to me. I’m not.

All these experiences have made me that much more apprehensive to make professional type calls. They always end up feeling like an exercise in embarrassment, humiliation and self-deprecation.

My overall issue

This entire process doesn’t take into account the fact that I live with a chronic illness that involves significant cognitive impairment, anxiety and depression. Which means, it also doesn’t take into account things that may sound and look straight forward to most people, don’t to me. Not anymore.

Receiving this letter, struggling to fill it out correctly and getting it mailed back in a timely fashion wasn’t easy. Frankly, it felt damn near impossible. And I’m not alone in this struggle.

What would work better

I’ve asked and explained to LTD numerous times why I’d prefer to be contacted via email.

  • It’s something I check multiple times a day.
  • I keep emails in my inbox until they’re dealt with.
  • Email enables me to take the time I need to formulate questions to get clarification.
  • A record of our communication helps ease my anxiety.
  • Read receipts allow us to confirm delivery.
  • If there’s a form to fill out, the ability to do so digitally enables me to get it right.

For example, I reviewed the pictures I took of my handwritten, completed form, and I see I made a stupid mistake. It asked for the name of my specialist. I listed my gastro specialist because he’s the specialist I saw most recently. Reading it over, I realize they wanted the name of my regular specialist; my rheumatologist. Too late, the form’s been sent.

In the end, they should send me correspondence via email simply because I asked! It’s an accommodation I requested. That should be enough. It’s how I’d like (and need) to be contacted.

Yet, it doesn’t seem to matter how many times I ask and explain, I continue to get requests from them that push my cognitive abilities well past the breaking point.

Final thoughts

Disability insurance providers and government disability programs ask us to jump through hoops, complete forms, answer questions and handle interviews like we have the same cognitive abilities and mental faculties we’ve always had. These processes don’t take into account the fact that our brains don’t work that way anymore.

It’s as an accessibility issue. These systems and protocols still function off an ancient and archaic view around disability. It’s time these companies and programs (and everyone else for that matter) employ a sensitivity and understanding that goes beyond just approving people suffering mental disorders for benefits. Our invisible illness and disability, like all others, needs to be better understood and properly accommodated for.

And to my LTD provider specifically, here’s an idea. If you want an update on my “condition,” call my doctor. I signed a waiver four years ago giving you permission to talk to her any time. Frankly, she’s the most competent of the two of us to speak about my chronic illness. She did go to medical school after all.

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Anne Hartt is a writer, blogger, dog mother and fibro warrior. In her mid-40s, she’s learning to navigate midlife with a chronic illness and an exploding libido. With a degree in journalism and nearly 20 years in corporate communications, she writes about self, sex, love and living with an invisible chronic illness. She’s from a small town in Eastern Canada where she lives with her hubby and three crazy dogs.

Invisible Illness

We don't talk enough about mental health.

Anne Hartt

Written by

writer. dog mom. fibro warrior. Navigating midlife with a chronic illness & exploding libido. I write about self, sex, love, health & humor.

Invisible Illness

We don't talk enough about mental health.

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