Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

We all do it, no matter how sick we are: we try to come off like we were still healthy.

When you get ready to go see a doctor for the first time, the uptheenth doctor you've seen as you try to get a diagnosis (other than "you're just depressed - just take this pill and get out and do something and you'll feel better"), you groom yourself as if it was the first day on your new job where first impressions really count.

Well, they do count.

If you sit there looking like you just got back from a week at the spa with a brief stop at the barber shop or beauty salon, it's going to be a lot harder to be taken seriously as a seriously ill person.

If you feel like crap, it is okay to look like crap. Chances are, by not spending the time trying to make yourself look like a million bucks (okay, a thousand bucks), you will have a little more energy and cognitive function that will be much better used talking to and listening to your doctor than standing in the shower and dialoguing with your hair brush.

If you spend eons laboring over the SSA and other applications and forms, your perfectionist Type-A personality driving you to try to appear as smart and intelligent and together as you were when you were healthy, the people whose job it is to read those forms and assess your degree of functional impairment on a day-to-day basis are not going to get a realistic idea of what you struggle with on a daily basis.

Laboring over your spell- and grammar-checker, like laboring over your appearance, is a really stupid tactic when it comes to applying for disability and communicating with your doctor about your illness. It also makes the whole forms-filling-out thing way more stressful than it already is and, trust me, it is very stressful.

When you fill out the forms, don't fill them out so that they reflect the one decent half-day you may experience once every 4-6 months. Fill the forms out so that they reflect the daily reality of your life as a chronically sick person: be honest about the pain, about the basic activities you can no longer do, and how badly you do the things you are able to do.

SSA and your doctor don't care if you can't go hiking in Nepal any more: they care if you can clean your house, do your laundry, grocery shopping, prepare meals, etc. It matters if it takes you two days to recover from a 30 minute trip to the grocery store or your 8 minute office visit with your HMO doctor.

It matters if you can only manage to vacuum a room or two every 6 months or so. It matters if you forget groceries in your car and don't realize it until you get into the car to go someplace a week after you went grocery shopping and realize that you DID remember to buy the milk...you just forgot to bring it into the house.

They don't care if you can't fly a plane any more: they care if you get lost when you are out and have to keep asking for directions because you can't remember them and can no longer read a map.

They don't care if you can't keep a pet or wear perfume yourself any more: they do care if you are so reactive to chemicals that you can't spend more than a few minutes in any environment that has outgassing photocopiers, white-out correction fluid, carbonless forms, and people wearing fragranced personal grooming products.

They don't care if you have to take an antihistamine or use an inhaler to deal with exposure to common allergens: they do care if antihistamines and inhalers don't work to prohibit symptoms ranging from migraine headaches, bloody noses, loss of voice, or passing out from chemicals in and offices, stores, and public places.

They don't care if you can't do your former job: they want to know why you can't do ANY job. If you never know, from one day to the next, if you are going to be able to get out of bed and get your meds and a meal bar down, there's no way you will be kept on the payroll of any employer who expects his or her employees to be at their station on time on the days they are scheduled to report to work.

Hand-write the forms you are required to fill out. If you misspell something, leave it. If you make mistakes, cross them out and make the corrections wherever they fit in.

Don't run to the dictionary and look up bigger words or medical terminology: you aren't going for class rankings here, or a raise, or competing for Employee of the Year.

Your life is at stake, here: disability benefits will help pay your rent and utilities and give you the opportunity to make the choice between buying food or buying mediations. Don't Type-A yourself out of it!

Yes, it's hard to get to all the doctor's appointments and go through all the testing you need to document your disability and inability to function sufficiently and consistently enough to hold down even a minimum wage part-time job. But what else have you got to do when working is no longer an option? Make those appointments, no matter how bad or how long you collapse once you get home.

Being able to hold down a job--any job--means being able to work without constant supervision, without having to be retrained every day, and showing up consistently and working the assigned shift. If there is any reason why you cannot do consistently show up on time for enough days each work period that will keep an employer from firing you for excessive absenteeism and tardiness, you need to state that every way you can on your functional capacity and application forms.

Focusing on all your acquired shortcomings: on how sick you feel; how poorly your brain now functions; on your lost vocabulary; ability to construct proper sentences, paragraphs and documents, all the things you forget to do; and all the things you can't do, sucks. It's depressing, it makes you feel completely worthless, and it destroys whatever shred of self-esteem you've managed to cling to as you descended into the hell that is chronic incapacitating illness.

Once you are done with the process, once you have made it through the possibly 2.5 years of being tortured by SSA until they finally decide that you are indeed disabled, a lot of anguish and acute depression caused by having to focus so heavily on all the negatives will fade. You will be left to cope with your life on a day-to-day basis.

Every couple of years, you will need to be prepared to sink into this slough of despair once again, when your SSA review comes around. Accept it, get through it, ask a friend or family member for help if you can, and get it done.

Until there is a cure, or something that will ameliorate enough of the symptoms consistently enough that we can once again hold down a job that pays a living wage (SSDI and SSI are not living wages), this will be your life. The better you are at developing coping skills, the better you will be able to function when you aren't having to deal with SSA.

One final recommendation: many of us have a tendency to not go to a doctor once we've been granted disabled status. There's no point, we think, since there is no cure, nothing that will once and for all get rid of some or even a few of my symptoms, so why waste the time, energy and co-payment (or full payment, if your health care provider doesn't accept Medicare). Aside from the fact that not going to the doctor means not catching other problems before they become severe, and missing out on new treatment protocols that may in fact help relieve some of your load, if you don't go to the doctor and keep up the ongoing documentation in your medical files, SSA is less likely to believe that you are still sick when it comes time for your next review.

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