Defining #Disability

In researching the disability requirements for private insurance policies and the SSA, I realized a lot of things­—only one of which is that the actual process of applying for disability is suited more for the abled than the sick.

Applying for disability is a paper-intensive process that involves months, if not years, of work, along with the unnatural ability to convince harassed and harried doctors to spend precious moments advocating on your behalf as well as the uncanny foresight to gather all kinds of documents and “proof” along the way, well before anyone would reasonably expect they’d get sicker instead of better. Basically, it’s an arduous, uphill climb designed to discourage all but the most tenacious from ascension.

But, that isn’t what I realized on the whole.

No, the number one thing I realized while looking into disability benefits was that chronically ill people think of our lives in terms of how sick we are on any given day. How badly we feel. Levels of pain, degrees of nausea, the extent of fatigue.

It’s all very subjective, that kind of thinking, and that’s why so many people fail when they try to obtain benefits. The insurance companies and the SSA don’t give a damn how we feel. They don’t care about how much pain we’re in or how nauseated we are or that we’ve never been so tired in our entire lives. They don’t give a shit.

Nor should they.

That isn’t their job.

Their job is to determine the limitations those symptoms and feelings put upon us. What can we do with that level of pain, fatigue, and nausea? What can’t we? What effects does severe vertigo or pain or any other symptom have on our ability to drive? To dress? To cook or care for our children? To work?

That’s what they care about. That’s what they are tasked with uncovering. And that’s what we need to tell them.

Chekhov once wrote something close to the popular quote, “Don’t tell me the moon is shining; show me the glint of light on broken glass.” Filing for disability is much the same.

If you’re trying to win a disability case, don’t tell them how much pain you’re in. Talk about what that level of pain keeps you from doing. Explain how the extreme pulsing in your head keeps you from talking on the phone or being in a crowded place. Explain how the severe vertigo you experience makes it where you can’t drive safely, stand upright without support, or focus on a computer screen.

Discuss your symptoms but only as a way to explain your limitations. That’s how you define your disability. That is how you win your case.

Feeling Less Than Able

Lately, I’ve been thinking about my life and the impact I want to have on the world. And, as I consider the list of things I’d like to accomplish, I’ve realized a disturbing fact – there are some things that I now doubt my ability to do.

These include the ability to:

  • Commit to any high-stress job that requires long days in a typical office environment. This means many things I would love to do – such as going to law school and working as a PD,  going to grad school and finishing up my neuropsychology degree,  or opening my own financial management consulting firm for small businesses – are potentially out of the question forever. Fluorescent lighting, varied sleep schedules, and long, long hours all mean increased migraine.
  • Make promises to my daughter about future events. Some days the migraine comes on full force, and there is nothing I can do to stop it. It doesn’t matter if she’s in a play, or has an award ceremony, or wants me to attend a field trip. I can’t do it. And, knowing this can happen, that I can be completely disabled at a moment’s notice, I don’t promise it. But, I wish I could.
  • Pack my calendar. I can get a lot of stuff done in one day. I can write five articles, edit three chapters of a book, read two newspapers and two trade journals, research a big project, enter two poetry contests, help my daughter with homework, go to dance class, make dinner, balance our budget, pay bills, and spend quality time with my husband, all in one day. IF, it’s a good day. But, if it’s a bad day, if the migraine kicks in by 7 a.m. and ramps up to a level 7 or 8 by noon, I’m lucky if I get even one of those things done – let alone all of them. So, while I can crowd a lot of stuff into one day, I have to leave room for the bad days. And, this means planning for less than I feel I can accomplish, just in case some (or all) of tomorrow’s scheduled work has to be pushed off until the next day. And, I hate that.

There are, of course, more things that could be added to this list, but these are the big things. The things that make me feel less than able even when I don’t feel dis-abled. These are the things that remind me, on a near constant basis, that I am, in fact, chronically ill. And, on some days, I really, really resent that.

What about you? I know I’m not alone. What has migraine disease left you feeling less than able to do or accomplish?