I hate it when people get the wrong idea about people on disability. I mean, I know there are dishonest people in the world who try to take advantage of social programs, but my friends and I do not fall into that category.

As a teacher, I was considered a state worker, and therefore not eligible for state-funded disability programs. I have no idea why, and it makes absolutely no sense to me at all. I contributed to it through my paycheck yet I could not collect from that fund. Instead, I could only collect disability through a private insurance company, with premiums (that increased every single year and even doubled when I turned 40 years old) deducted from my paycheck. There is nothing like working your tail off and bringing home less money year after year despite being at the top of the salary guide, with a Masters Degree, and longevity in the district.

As much as I cursed it every time I saw my paycheck, I was grateful for it because although it was not the same as my paycheck, it would allow me to at least pay my bills if ever I found myself unable to work, and that was the thought that I carried with me to justify it. But the first time I needed it, I called to report my disability, and was appalled to say the least. I explained to the desk monkey (sorry if this offends anyone but what follows will make you feel the same way I’m sure) that I was having an MS exacerbation. The questions that followed: How long will you be out? Are you having surgery? Did you have a baby? How can you not know how long you are going to be out? My answer: Ummmmm because I have Multiple Sclerosis. Clearly there was nothing in the list of scripted maladies that the desk monkey could equate my situation with, and he knew nothing (and I mean absolutely nothing) about MS. Not feeling well and talking to a bunch of idiots is not an easy thing to do while trying to maintain my composure. I ended up staying on disability for the first half of the school year, and I even self-paid the premiums while I was not collecting a paycheck.

Seriously. Handwriting all this with a tremor is stressful and overwhelming, to say the least.

Yet I still couldn’t complain because as much work as it was for me to get these people to understand how unpredictable MS is, I was able to pay my bills (with the help of my husband) while I was trying to rehabilitate during my absence from school. I happily returned to school, glad that I was strong enough to get there, and thinking I would never need to file another disability claim for the rest of my career. That’s me, the girl with her glass half full, thinking she was exempt from the course of MS progression, but the sad truth is that very few people have benign MS that never relapses, and I’m not one of them.

Fast forward to the year 2013. I found myself in a worse position than the time I was out on disability six or seven years prior. This time I filed my claim, pretty much without incident, and I was assigned a claims manager who still works with me to this day. He understands my situation, and is very kind, always starting out our conversations asking me how I have been feeling. He understands (I think) that I am not going to get better, and considering that I am recognized as disabled both by the state of NJ and the federal government, things are slightly easier. Yet every year… every SINGLE year, I am required to fill out an extensive packet documenting my “activities of daily living”. This might seem a small task but for someone with MS, it is overwhelming to say the least. It contains about 10-12 pages, that must be handwritten, which is not easy with a hand tremor that reduces my ability to write. When I see the envelope come in the mail, I cringe and panic, and I wonder when they will understand that MS does not get better. It progresses, even in small ways, but those small ways can be very difficult to manage despite the fact that I am not working.

This is me, every year…. hardly able to crawl out from under the massive pile of paperwork required to document the fact that I still have MS.

If my experience with my private disability plan is any indication, we have made some progress as far as awareness goes, but we still have an incredibly long way to go. Multiple Sclerosis is exacerbated by stress, and the constant submittal of the same paperwork does not help. I would love to see in my lifetime a day when people understand that MS limits my ability to complete even the most mundane of daily activities, and that having to justify myself all the time is no longer necessary.I mean, receiving the same packet every year is the same as asking me if I still have MS and if so, how much longer will I have it. I wish I didn’t “still” have Multiple Sclerosis, but unfortunately I will likely spend the rest of my life with it, and I am ok with that.  It would save us all a lot of paper, time, and energy (not to mention stress on my part)  if they would just get a clue already!

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It’s complete nonsense to put anyone in such misery already in a position of jumping hoops and more stress and proving pain. System broken.