RA and the "B" Word, Burden
There’s one “b” word that people with rheumatoid arthritis and chronic illness are especially afraid of. No, it’s not the b-word you’re probably thinking of (get your mind out of the gutters!), but it is still one that inspires shame, fear, and the worst thing of all – pity. The word I’m talking about, of course, is “burden.”
"Becoming a burden"
It’s an interesting saying if you look at it, especially the “becoming” part. It insinuates it’s a slow process – a gradual transformation like Jeff Goldblum in the movie The Fly. Except in this case, it’s a particularly lazy horse fly that wandered in by accident because he thought it was a good place to take a nap instead of doing his work. Then, over a month or two, you start to procrastinate, call out sick at work because you wanted to play that new video game all day, and eventually, before you know it, you’re living in your parents’ basement and mixing Georgi Vodka for 6 dollars a handle with diet Crystal Light while you play video poker on your cell phone all day long. A total conversion into the ultimate lazy burden.
Unpredictability and the b-word
In reality, though, as vivid and weird as the Kafkaesque metamorphosis above is, it’s not what happens at all. When you live with rheumatoid arthritis or any other chronic illness, being a burden can happen to you in the blink of an eye and the worst part is, it can be through no fault of your own. Maybe one day you are just minding your own business, doing the best you can to manage your RA and balance it with your work life, and you take off an afternoon to visit the doctor. The next day you come into work and you’re told you have “too many absences” and you’re being let go.
It can happen – it happened to me, actually. Suddenly, I didn’t have an income and in 24 hours, I had gone from providing for myself (with a modest income) to living off the grace of my parents with no income whatsoever. I became a burden in a mere fifteen minutes, and it immediately began to weigh upon me.
Will disability insurance help?
So, what do you do at that point? Many of us choose to go on disability. Good thing that solves the problem, right? No more burden! Well, unfortunately, that comes with its own set of stereotypes and tropes.
Despite what the media might like to portray, most of us aren’t “moochers” who want to live off the system and lay back and relax in our recliners while we collect those sweet, fat, government disability checks. That’s complete baloney. The whole straw man, “fake disability scammer” thing is just that – made up. There are a number of reasons it doesn’t make sense, but the most prominent one is that disability doesn’t pay! I know this may be shocking to some of you, but most people on SSD make about 800 dollars a month. Think about how much that is in this 2022, post-COVID, disaster of a supply-chain world. It’s certainly not enough to cover rent, and it barely covers a month's worth of food for two people. In addition, that number can be further reduced by medical insurance premiums and just plain old medical bills. In fact, those who get disability from the government (at least here in the USA) are the only group on government assistance legally allowed to make below the poverty limit.
What this all means is that this isn’t a solution that helps ease the, uh, burden burden. In fact, if you add in the fact that those on disability are only legally allowed to make a total of about 1900 dollars a month (including disability payments), then it can actually make us more reliant on others because we are terrified we might lose disability and the medical insurance that comes with it – basically our lifeline – if we dare to do too much work for ourselves.
Self-sufficiency and RA
As you can see, there isn’t much you can do when you have a serious chronic illness, like rheumatoid arthritis, and you want to support yourself. Many choose not to go on disability and keep working, despite the fact that the mental stress and physical exertion of keeping up a day job can make RA and its damage much worse in the end. Why? Is it because of the amazing work environment and fantastic benefits that most jobs offer? The fact that the office itself is such an amazing place to exist that it’s like going to a spa resort every day? Or maybe your boss is such a genuine and humble human being that working for them is like being the son of the Dalai Lama and Mother Theresa themselves? I’m going to go ahead and say the answer to all of those questions is a big fat “no.”
We do it because of one main reason – to be self-sufficient. The fear of becoming a burden to our friends and loved ones is real. That’s how powerful of a motivator it is to not be a burden – enough to make us suffer through some of the worst kinds of exhaustion, strife, and stress, just to be able to contribute.
It's ok to accept help from others The real question is, what to do if you do become a burden? The answer is that you keep in mind that even if you don’t contribute monetarily, just like me, you probably do all you can to help in whatever capacity you are able. It may not be a lot in our minds, but I promise you sometimes, just the effort is enough to show people you appreciate what they do for you, and, well, sometimes that has to be enough. Talk soon.
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