As a 33-year-old woman with moderate Cerebral Palsy, hip dysplasia, and chronic pain, all of which leaves me dependent on a wheelchair, I often deal with what you would call “unemployment guilt”.
That is, feeling guilty for not being able to physically work a 9-5 job. You see, as someone with chronic pain, it is very hard to predict how your day is going to go. There are going to be some days when you can function OK, and there will be others where you cannot sit for too long, leaving you with the only other option, which is to depend on your bed for comfort. While most people would be thrilled about the idea of lying in bed, I will be the first to tell you that it is not what it seems to be. Often, when the pain is bad, relaxing is made even harder because you must wait for your muscles to calm down, to get “unstuck” so that you can get comfortable. Realistically, this can take up to three hours depending on the severity of the pain.
The following may just be an insecurity of mine, but I think if placed in my situation, you would be insecure about it as well. Given the type of Cerebral Palsy I have coupled with my hip dysplasia, I must use the bathroom in an adapted way. I can do this independently at home, but if I am out in public I refuse to. Let me explain. For me to pull my pants down and up before and after using the restroom, I must get on to the floor so I can “stand on my knees” to get my pants back up. I don’t know about you guys, but I would feel awfully uncomfortable having someone in the workplace help me in the bathroom. What if they got my urine on their hands?? The possibility of that is not only very likely, but it is disgusting and embarrassing. Not to mention, there is no way I would ever get on the floor of a public bathroom just to say I used it independently in public.
This is a HUGE issue for me and the reason that I count my blessings that I can write from the comfort of my own home, and at this point, I love writing these articles so much that it doesn’t even feel like work. Not only are the issues hard for me to swallow, but they are extremely hard for others who are not part of our journey to truly comprehend.
Yes, I am a high functioning and intelligent individual despite my disability, and I count my blessings for that quite frequently. I am so glad that I was born with the ability to write so concisely, and it is a blessing. Hidden beneath all my smiles and happiness though is the devil. The devil on my shoulder that tries to convince me of all the bad things that I’ve done. The one that makes me feel guilt when I shouldn’t. Then, there are the people that do not understand; the ones that are only trying to help when in fact they are not helping at all. The ones that just matter of flatly say, “I think you should get a job” or “I think you should be doing something”. They do not ride along on our journey so the fact of the matter is they don’t quite comprehend that having multiple disabilities and physical ailments is, IN FACT, a full-time job. It is not like we are given the luxury of just sitting around without worrying about how we are going to attempt to function. Fighting against your own body day after day takes a toll.
I know that those people who say those sorts of things mean well and only want to help, but the truth of the matter is that it does not help at all. It only makes the guilt and frustration worse. I have gotten to the point that I will not even talk about it with anyone because the frustration of it all just makes me want to break down and cry, and that is not something I like doing often. While we are on the subject, too, I hate when others say, “So what do you do all day?” Not like it is any of their business, but I do stay plenty busy writing articles, reading, coloring, watching movies. I am not one to be lazy in fact I must be doing something constantly. I hardly ever get bored, and I am very proud of the fact that I can stay busy in the face of my limitations. Please be aware that I am not all saying that other people shouldn’t encourage people with disabilities, but they should just attempt to be mindful that we do what we can with what we have been given.