Okay, here’s the deal. I want all of you reading right now to imagine yourselves waking up in terrible agony both physically and mentally everyday. The guilt of letting down everyone around you is constantly pressing down on your shoulders as you try to get out of bed. Literally everything in your body is aching and you feel overwhelmingly groggy. Thoughts relentlessly bombard your mind, reminding you how worthless and pathetic you are. You can’t help but feel after a while that the thoughts are right.
Even when your surrounded by people you can’t help but feel so entirely alone. Some days you just want it all to stop. The pain, the memory problems, the depression and general anxiety. You want it all to stop but it never will. Imagine that you will have these conditions forever. They can get better but you will never be cured. You don’t have access to the best medical care, medications are expensive, doctors and specialists are too busy to deal with you.
Now imagine how hopeless that could make you feel. Imagine going from happily working two jobs to having to quit both of them because you feel like your body is giving up on you. You try going to college and that is still too much. No matter how much you force yourself to go to classes and push yourself. You still end up in the hospital, twice because your body gives up on you. You try getting help from your school Doctor because your regular Doctor is too busy. Only to be told you’re a doctors WORST NIGHTMARE!
Now if you didn’t feel horrible before. I’m about to continue to when you finally manage to get some help. Continue to imagine. You move out of your parents, your growing up, “too young to be sick.” You want to start your own life, your own family. You manage to get on some sort of disability assistance. Only to live below the poverty line. All because some illnesses you DIDN’T choose to have took away your ability to work. Now imagine having someone amazing enough, despite all the medical problems, sees through all of that to want to spend the rest of their lives with you.
It feels like it’s looking up right? Well unfortunately, if that person you love gets a job and manages to make any sort of income, it gets deducted from your assistance. Eventually, you would end up being a burden to your spouse. You both end up living below the poverty line. But, at least you have each other. So it’s not all horrible.
Now let’s say you want to start a family. A part of you feels terrified and guilty. Thoughts pour into your mind. What if these illnesses are hereditary? Some of them are. You wouldn’t wish this pain on your worst enemy. So how could you do that to a child. But there is that deep biological drive that makes you want your own offspring. You know you could adopt or foster. You feel selfish for wanting to have your baby have half your DNA. Yes there are many other options but you want to go through the experience of carrying your child. There are also many medical ways to avoid having a child be born with your hereditary illnesses but like stated before you don’t have access to that kind of care or resources.
So what do you do? You put it off for now. Eventually you’ll decide but that weight will remain on your heart.
If your still reading, there is one last thing I want you to imagine. Your spouse and you want to get your own home. You know it’ll be hard, expensive, but you hope possible. Despite everything life has thrown at you, you’re still determined to pull ahead and somehow live comfortably. You start doing research, house market, foreclosures, prices, ect. Basic stuff. Now imagine you stumble across a forum where someone has the same question you do.
“Is it possible to buy a house if you’re on disability?”
You find some encouraging comments but to your dismay even the encouraging ones are not of people who are also chronically ill. The ones who are haven’t been able to buy a home. This breaks a part of your hope, it shatters your soul a little. Then you come across a comment that really hits you. This stranger says exactly what your brain tries telling you every day. This stranger says people who are on assistance are nothing but a burden to society and only draining their tax dollars.
You slam your laptop closed. Your mind starts racing with those words. You can’t help but think. I never chose to be like this. I never wanted to live like this. If I could trade them lives, a working body and a job. I’d take that over having a broken body and mind any day. You can’t help but think back to how much you miss working. You wish you could go back before your illnesses progressed. You beg to whatever deity or ancestor that eventually someone comes up with a cure. Or even a proper treatment for your illness.
Now if your still here. I want to add that this is the hard truth of living with disabilities, specifically invisible illnesses. And I have only a few words for those who believe we are a burden on society. No one EVER chooses to be born like this or to develop these illnesses.
Thank you for reading.