It’s not enough to afford to live comfortably. I mean, you’re stuck waiting until a certain time of the month that you receive money.
You’re stuck to a certain time of the month that you can pay your bills and after that what do you have left? Especially if you are a single mother like me?
It absolutely stinks because I want to do things with my child. I don’t want to always be in the home.
Yes, there’s plenty of things you can do that are not expensive.
But when you have lived a life being able to do things for yourself and your family, and you’ve worked hard for what you have, it’s hard to be confined.
For the last year or so I’ve been thinking about generational wealth, which is another legacy I want to leave my son and the next generation.
But I see that Social Security disability does not allow for that. People don’t understand why I don’t just get off it, but if I didn’t have a disability, I wouldn’t need it.
Thankfully, I live with my mother, and I don’t pay the rate of a normal person having to pay right in the world. But I don’t want to feel like a freeloader.
I believe in paying, I try to work. I like working but at times it can get overwhelming. And my disability can be debilitating.
I often speak about being more than my disability. I am a loving, caring, good-hearted, hard-working person that loves life.
But when you are confined to a certain thing, you worry about so much more that you can’t control. I try not to worry; I try to pray versus worrying. I tried to give it all to God.
If you’re not working, your family thinks you’re a loser, and you’re not doing anything.
“Oh, you have plenty of time, you can do this and that, oh you need to get a life.”
I have a life. My life is just not the picture you have for me. It’s not even the picture I want necessarily.
I am well educated; I went to college and I didn’t plan on getting sick. I didn’t ask to get sick. It’s just something that happened, but it’s harder for people to accept it because it’s not a physical disability.
I’m not in a nursing home because I’m not needing care 24×7, the way a person would if they had a physical disability.
Sometimes I think it makes it harder to have an invisible disability. It’s frustrating.
Because people think you can just get over it, suck it up, get better and be OK.
Medicine has definitely helped, but when you’re worried about other things subconsciously, and not trying to worry, sometimes that can overtake your thoughts.
It causes insomnia and loss of appetite. People think if you have lost appetite, you’re automatically be feeling better. I wish that was the case.
If I wasn’t so nervous, or so scared, or so worried, or so frustrated, then I would have an appetite and then I would probably eat too much.
But my disability takes a lot of mental strength and a lot of will power to live. A lot of love for life, and faith in God versus humanity. Community has failed time after time.
The government not understanding or wanting to put you in a bubble.
Just makes it more disheartening and complicated.
