(Sorry for the bad grammar, thank goodness for spell check, and please understand this blog comes from a personal place of struggle and the hope to help someone else who might need it.)
When I had to quit working after 18 years and at only 33 years old, disability was (still is) very hard for me to accept as my only option. I don’t make enough on disability to pay my monthly bills, I’m frequently in bed because of pain or exhaustion, and I struggle trying to get the MUST items on my to-do list done. I’m not always successful.
Some days, and sometimes for a week or more, I am in bed and or unable to do much of anything yet I’ve not done anything mental or physical to explain it. Talk about frustrating. If I’ve pushed myself that is easier to understand but when there is no reason it is very frustrating.
I’ve been asked questions, had statements made, and downright accused that this is the life I’ve chosen, that I’m lazy, and/or just working the system. Whoo hoo! Yeah! Can’t you tell that I’m having a blast?! And, by the way, a person can not be deemed disabled just by saying that they are. It is a long, hard, exhausting process because the insurance companies and government do not want to pay out even though you’ve paid in. Admittedly they are also trying to weed out those that are trying to abuse the system.
And God forbid that I’m actually seen having a decent or even good day. If only everybody understood what it means to me to have a “decent or even good day.” There is always a price for me to pay for trying to live a “normal” life but I continue to try. And some of those decent days happen because I force myself to put on a happy face. I don’t want to look the way I feel. Sometimes there are days that I try to fake it until I make it, usually those are days when I am in contact with people in the real world and that can be a good thing or a bad thing. It can be a bad thing when the energy it takes to fake it is more than my body is really up for and a price is paid.
I don’t understand all of my illnesses and I now know why it is called “the practice of medicine”. Fortunately, I believe I now have doctors involved that will help me continue to fight for wellness or at the very least a better quality of life, including going back to work someday.
What people see and think they see when it comes to some people on disability are too often an assumption. Just because you see me mowing my grass doesn’t mean that all is well. Just because I have a riding mower and a small yard doesn’t mean that I am lazy and have lots of money. For any physical or mental exertion I do just trying be an adult with responsibilities sometimes means DAYS in bed and getting NOTHING done. The cost of the riding mower was cheaper (for me and insurance) than continuing epidurals, physical therapy, medications, and doctors but that is not what people see. I try not to put myself in a spot to justify but I want to give a specific example. Even with the riding mower, I still have to take meds sometimes and I’m finally able to only go to the chiropractor once every two weeks, or more if needed.
Another example is about my vehicle. It’s nothing fancy but it was new in 2003. Once I accepted that this &^%#@+ disability sh*t was going to take a while, I considered trading it in. But, even though I had a current and always paid on time loan and excellent credit they would not do another loan for less money for a different vehicle because my debt to income was then and continues to be too high. I take responsibility for that (extremely unusual overspending despite the deal I got) decision and have thankfully managed to pay it off.
As far as financial help out there, you might be surprised to know that if you don’t have children and are not seriously behind on your mortgage and utilities there is little to no help. Have a kid or two and just let your bills go unpaid and there are lots of resources. I can no longer have kids and not paying my bills as best I can, while I can, is not an option in my world. I've been told that I have too much pride.
Another misconception is that I am on a prolonged vacation. Um, no. I see it as my full time job to do what I can do to be healthier, happier, and get back to work when it is possible. The mental, physical, and emotional stuff that comes with this ball of wax is beyond exhausting.
I could go on and on as all of this is a source of hurt, fear, frustration, anger, and even sometimes embarrassment. I guess I needed to vent. I am also hoping to open the eyes, hearts, and minds of others. Consider that you might not know all of the facts before you judge that person for what you THINK you know. It’s a book and cover thing we’ve all heard.
I do think it is important for me to say that I AM thankful for what I do have: insurance, SSDI income, credit good enough to live on, a house, a vehicle, food, my doctors, good and decent days, the occasional ability to fake my way through, mowers with which to mow my weeds (wink), utilities (including the internet!), signs of fight still left in this old girl, and of course some people that do care about me.
If you haven’t already read the blog at butyoudontlooksick.com about “paying people to stay home” and haven’t read “The Spoon Theory” please take a few minutes and read from the links below. I especially encourage anyone that has a person with invisible or chronic illness to look through this site as it has a lot of helpful information for the patients and the people who love and care about the patient.
http://www.butyoudontlooksick.com/articles/personal-essays/paying-people-to-stay-home/
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Thanks for taking the time to read this.
Kat
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