There are few words I hate to hear more than "But you don't look sick." Most people with invisible disabilities or chronic illness will tell you that they hate those words, too.
Unfortunately, there are a lot of people out there who think that unless a person is in a wheelchair or struggling to walk with a walker or crutches that there can be no disability. I have psoriatic arthritis (rheumatoid arthritis minus the rheumatoid factor), degenerative disc disease in my neck (C5, C6, & C7), fibromyalgia, Hashimoto's disease, IBS/gluten intolerance, hearing loss, sleep apnea, suspected CFS, and I'm in chronic pain. Chronic pain means little to no sleep on top of the already disrupted patterns of sleep suffered by people with fibromyalgia and chronic fatigue. On top of that, I get to wrestle with my CPAP mask and hose all night, as well as the pillow I need under my knees just to be even slightly comfortable.
I struggle to get out of bed every day so I can go to a job that is no longer satisfying and frequently frustrating, but it pays enough to get by. I'm a single mom in debt up to my eyeballs and need to work just to pay the bills, hoping for a little left over to actually do something enjoyable once in a while. I drive a lot for my job and when I'm not driving I'm sitting hunched over a computer. Neither of these activities is good for DDD or any other kind of neck/back problems. Some nights I can barely keep upright long enough to make it to my car.
What prompted this post is an incident that occurred at work just last week. Our office was split into two groups and half of us moved into another building across the campus. That was June 14, 2012. Our regional manager knew about this move since September of 2011 and told the powers that be that he had 3 people with disabilities (one in a wheelchair who remained in the old office) and that all ADA requirements needed to be taken care of before the move.
They finally resolved the parking issue (and not adequately, I might add) in early September, one year after the move was announced and three months after the move took place. Last Friday, they finished up another crappy job of making the doors handicapped accessible (don't ask). It is bad enough that they have done such a piss-poor job of accommodating the disabled, but the icing on the cake was when one of our facilities staff (while installing the door system) was overheard to say, "I don't understand what the problem is. There aren't even any handicapped people in this office."
It took all the strength I had not to fly out the door, hunt this guy down, and beat him with my cane. What an ignorant and stupid ass. Typical state employee (yeah, some of them are as bad - or worse - than you read about).
Oh, did I mention I work for a state government? One that prides itself on addressing disability issues? I'd name the state, but we've got a couple black eyes due to some high profile screwups and I'm not real proud of where I work right now. OK, it's Massachusetts. The Department of Public Health, to be exact. We've got career criminals being released after their charges were dropped because good old Annie Dookhan, model state employee, decided she had the right to deliberately tamper with evidence from drug busts. Now we've got a compounding pharmacy that is responsible for 9 deaths (at this writing) from fungal meningitis because they didn't bother doing any quality control and were apparently operating illegally. Guess who oversees them? Yup. The Department of Public Health. We suck right now and I'm beyond embarrassed to admit I work here.
Anyways.
I don't write because I like to complain. Most people who know me don't know a tenth of what ails me because I'm not the type to tell all to garner sympathy or favor. I tell people what they need to know and no more. ("Why the cane?" "I have autoimmune arthritis." "Oh, I'm sorry to hear that." "Thanks. It could be worse. See ya later.")
And I'm not writing in my blog in hopes that someone will read this and feel sorry for me. That's not my intention at all. I'm actually the stoic type that suffers in silence, refusing offers of help unless I really need it. I never ask for help either, so when I do I really, really need it. I thank God every day for my daughter who is so in tune with me that she knows when I need help before I have to ask for it. (And just in case I've given the impression that I'm some kind of angelic being that always smiles through the pain - I'm not. When I'm in pain I get grumpy. When I'm tired I get grumpy. When I'm having anxiety attacks I get grumpy. I tend to be grumpy a lot. I do my best not to be, but it's not easy.)
Like many people with chronic illness or hidden disabilities, I have bad days and not-so-bad days. Just because you catch me on a day that I can walk without my cane doesn't mean I'm all better. It doesn't mean I have no pain. And it most certainly doesn't mean that I'm suddenly no longer disabled. It only means that for just today (and if I'm really lucky, maybe tomorrow) I can walk a short distance without having my knees buckle or my hips give out on me mid-stride.
Before judging a book by its cover, people need to understand (and remember) that on their worst day they feel better than we do on a great day.
