Melissa Kaplan's
Chronic Neuroimmune Diseases
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Last updated January 1, 2014

In a perfect world, people who did become ill would have unlimited funds to pay for virtually unlimited time when seeing the doctor. In that perfect world, doctors would have lots of time to thoroughly question the patient, probing for impairments and limitations.

Patients would have a limitless supply of money to get the all the tests and lab work they needed, along with useful functional testing and neuropsychological batteries their doctors happily order for them whenever needed to diagnose or otherwise try to figure out what is going on. Doctors would be able to confer regularly and at length with the other practitioners engaged in the testing and treatment of all their patients. All practitioners would have an endless supply of hours to write lengthy, detailed chart notes for each patient.

In case you've just emerged from a cave where you've spent the last 100 years, our world is anything but perfect. The more money you have, the more likely you are to attain the above. Most of people reading this article, however, live in a very different reality, one in which we struggle daily with illnesses for which there is no long-standing, clearly defined set of tests nor standardized, highly and always effective treatment protocols ("cookie-cutter" medicine). While there is no end of doctors who will treat us as hypochondriacs or who will cheerfully refer us to psych services, there is a dwindling set of knowledgeable doctors willing to leap into our abyss.

In the perfect world scenario, when a patient who has become too sick to continue working asks their doctor to write a "disability letter", the doctor would be able to write a comprehensively detailed letter to an attorney, workers' compensation company, long-term disability carrier, or Social Security. The letter would describe in detail the patient's limitations and impairments which would be supported by the extensive documentation in that doctor's files and in the files of the other health care providers the patient has seen for the disabling conditions.

In that perfect world, where each day is 36 hours long and each week has 10 days, there would be plenty of time for the doctor to spend a couple of hours in intense detailed review of the patient's comprehensive chart, including all the notes from all the other practitioners who are seeing the patient. In that perfect world, the doctor could spend an hour or so dictating the disability letter which would be immediately typed up and sent off via Express Mail or couriered directly to the person or agency needing that letter. And all this work would be done for free.

In our world, the only easily obtained information from most patient's charts is their name, age, sex, and any diagnoses the doctor has clearly noted on his or her hastily scribbled chart notes. Since comprehensive functional, neurological and neuropsychological testing is rarely done, and if done, the resulting reports may never have been sent or given to the doctor being asked to write the disability letter, the doctor is left to create a disability letter virtually out of thin air.

This is not to say that our doctors didn't listen to us when we ran through the disjointed litany of our symptoms and complaints. It is not that our doctors don't believe that we are really so sick and impaired that we cannot hold down a full time job - any full time job. It is just that most of our doctors never get a comprehensive, organized listing of specific statements of problems that not only affect our ability to care for ourselves on a daily basis, but also our ability to function in the working world. We can say "I'm having trouble grocery shopping", but what exactly does that mean to the doctor when it comes time for him to try to explain to a company or agency looking for any possible excuse to deny your disability claim?

Does it mean you take a long time to work your way through your shopping list? Or that you have trouble discriminating the words on the labels on the shelves? That you can't figure out, even when looking at the information provided by the supermarket, which product is the most economical buy? Are you in so much pain and having such a decrease in energy and cognitive function by the time you get home, that all you can do is get your bags inside, find and put away all the refrigerator and freezer items, then fall onto the couch or bed, slipping into a fitful, pain-crazed doze for several hours before being able to get up again? Does it might take you more than a day to get all the non-perishables put away?

And therein lies part of the problem. Long-term disability carriers and Social Security don't care about how fatigued you get, or that you have trouble walking, or that you have brainfog. They don't care what your diagnosed illness is. They don't care that you can't do your last job. Symptoms and diagnoses are just words, not a delineation of why you cannot hold any job in the national economy. Symptoms and diagnoses don't say why you need in-home support services, or more IHSS hours than you are currently being allowed by the human (dis)services agency whose role it is to bestow those hours upon you.

In a perfect world, people like us wouldn't have to struggle daily with our dysfunctional brains and rebelling bodies and have to be a proactive advocate on our own behalf. In the real world, if we do not speak up and do for ourselves, there is rarely anyone with the time, knowledge or interest (or compassion) to help us advocate for ourselves, let alone do it all for us.

Thus, it is essential that we recognize and accept that we play a vital role in providing written documentation to our doctors to assist them in doing what we ask of them. We must be the ones to help them document our inability to work and need for assistance, documentation that will help them write the disability letters we need from them from time to time.

Start thinking in terms of job functions and activities, and what your limitations are:

Sitting
How long can you sit in one place? What specifically happens if you sit too long? How would that affect you if a job required long periods of sitting time?

When I was healthy, I had two herniated lumbar disks that made it impossible to sit for more than 15 minutes or so. I could stand, so I moved a lectern into my office at which I did 'desk' work and computer work, placing my keyboard on the top.

Now, sitting too long tightens up neck, shoulder, back and leg muscles, requiring lots of stretching and rotational movement every 10 minutes or so, as well as getting up to stretch and move around. In a job setting, this would greatly reduce productivity, and be distracting to co-workers around me. These disruptions also cause me to lose my place in what I was doing, so I have to backtrack to figure out where I was, and then continue working for 10 minutes until the next flex/stretch/rotate/walkabout break.

Standing/Walking
How long can you stand on your feet, standing still? Walking? Does your pain/stiffness increase the longer you are up? What happens to your ability to think as the time goes on? Word finding? Being able to enunciate clearly? Follow conversations? Follow directions?

When I was healthy, suffering only from the herniated disks, I could stand for hours, and often did, working in my office, attending meetings, standing at a lectern to make and review notes, pacing the room when listening or talking.

Since I've been sick, being completely vertical causes a drop in blood pressure, which results in pain, starting in my legs and working up, until my entire body is in excruciating pain, more debilitating than the herniated disks. As the pain increases, my cognitive function and fine motor control starts to go. I have trouble following directions, my already impaired ability to write legibly rapidly worsens, and I have trouble finding words.

Chemicals that didn't noticeably affect me before now start to cause symptoms, such as headache, breathing difficulties, loss of voice. This reaction to being on my feet preclude me from working at jobs that require a lot of vertical time, including stock clerk, cashier, sales person in a moderately busy store, food service, etc.

Following Instructions/Directions
Can you follow correctly simple written directions? Spoken directions? Can you remember a sequence of 5 or more steps to complete a task? Up to five? Do you remember a sequence, but only for a short time? Can you catch your own mistakes? Can you remember a sequence from one day to the next?

In a work environment, tasks need to be done in a certain way and within a specified period of time. If it takes you much longer because you have to constantly re-check the instructions, and then recheck your work to make sure you did it correctly, it is going to take you much longer to do your job than the co-workers doing the same job, greatly reducing your productivity.

Cognitive Function
Cognitive function declines in many illnesses and as a result of head trauma. But the term "cognitive function" itself really says little. We know that the term encompasses everything from not being able to understand the directions of a recipe we've made dozens of times before, to not being able to organize the order in which we will do the errands that need to be done, to using the wrong words when speaking or writing, to looking high and low for our slippers only to come across them in the microwave or dishwasher.

Following instructions/directions and remembering sequences of steps is one part of cognitive function. In the work place, our brain goes to work in many ways that we don't normally give much thought to. Assembling and organizing work materials, prioritizing multiple tasks, and distractibility (getting easily distracted, and/or being able to quickly re-focus on the task once an interruption is over) are all related to brain function.

So is using a calculator to run simple sums…and not being able to tell if you really got the right answer or not. With many of us, our brain signals sometimes gets scrambled by the time it gets to our fingers, and our eyes see what they expect to see, rather than what is there. Thus the numbers we meant to hit aren't the ones we actually hit, and our brain doesn't catch the error when looking at the display or paper tape. Even running the same intended calculation again and again may not help.

At home, while deducting checks from our running total, this isn't a problem. At a job that requires accuracy and maintaining certain levels of productivity, it can result in significant errors and termination due to inability. This type of cognitive problem will adversely affect data entry of any kind, as all entry needs to be eyeballed for accuracy and corrected on the fly.

Consistency/Persistence
Can you show up, on time, every workday? Can you remain at your assigned workspace, working productively, throughout your assigned shift, other than normal breaks and meals? For example, your job (not necessarily the one you used to have, but the less demanding ones you've tried working or considered working at as your health has declined) requires you to show up at 8 AM five days a week, and work through the day until the 5 PM quitting time, taking only the permitted breaks and lunch.

Can you make it through the five-day work week? Can you make it week after week? Or, by day 3 or 4 of the first week? Or by the end of the second or third week? Or does your pain and ability to function during both work and off hours degrade so much that you cannot get to work on time? Can you stay the full day or do you need to take so many rest breaks that your effective workday is shortened to the point of being unacceptable to your employer? Or is your ability to complete your job tasks accurately and on a timely basis is so eroded that you are on the verge of (or receive) a disciplinary warning.

Clearly, one cannot anticipate every single job function of every single job that is out there. But certain things are standard in any job:

• · showing up on time every assigned work day, week after week, month after month;

• · meeting reasonable personal grooming and dress standards;

• · performing all aspects of the assigned job with acceptable speed and accuracy;

• · interacting courteously (or at least civilly) with co-workers and others regardless of how one feels;

• · being flexible as changes in the workplace or the job function occur, including learning and becoming proficient with new equipment, software, or procedures within the expected period of time;

• · get yourself home safely at the end of each and every workday.

It can be horribly depressing to think of all of our impairments and acquired functional incapacities, but it is something we must do, both when we apply for disability initially, and for each review period, when the disability carrier or SSA orders a review of all the medical records and any changes in function that may reflect someone who is now able to return to work.

Those of us with our collection of diseases and disorders demand a lot of our doctors when we ask them to write a disability letter, because few of us have any disease or condition which makes it immediately clear that we are unable to work at any job. (Being in a persistent vegetative state or dead or about the only two I can think of at the moment!)

Developing and compiling this type of information for your doctor is not something you can sit down and slam out in a few minutes. It is really something you need to start thinking about and writing down the moment you start realizing you are having difficulty performing your job functions at work, and taking care of yourself, your family, and your home. If you haven't already started compiling such a list, you need to start once you know that you are going to apply for disability.

The longer you are sick, the more things will change, so review the list periodically, and make any necessary additions to it as you think of them. When you are able to go out and do your errands, go to the doctors, etc., think about the jobs people are doing, and think about whether you would be able to do them or not, and if not, why not.

In the Disability section of my CND website, I have some forms that may be printed out, filled out, and given to your doctors. They are surveys of functional capacities, but they look more at activities of daily living (ADL) rather than job functions. They are a good start, and useful to fill out at least annually, so you can keep track of changes as your overall health and symptoms wax and wane.

You will need to build your own job functions listing, however, to supplement these ADL surveys. The surveys and your job functions listing will help provide the framework your doctor will need to help him write the disability letter on your behalf.

Please make sure to give your doctor plenty of time to review your file and supplemental documents, and to think about and write your disability letter. In a perfect world, we would be able to give the doctor several months to research and write such a letter. In our world, we have only a few weeks. Don't lay this on your doctor just a couple of days before the absolutely final-there-are-no-more-extensions-period due date.

You will also find a use for them in developing your own responses on the forms sent you by the disability carrier and SSA. Consider this framework to be a work-in-progress, updating it over time as the physical and cognitive changes caused by your illness evolves over time. Having these documents already compiled when your reviews come due will help--a little--to reduce the stress such reviews will inevitably cause.

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