Tuesday, July 15, 2014

Disability is not pretty.

If you follow along on my facebook page, you know that I just read The Fault in our Stars by John Green. I could relate to so much about the ugliness of disease,  about having hope that it's going to get better just so that others don't know what you are going through, and about keeping your dying dignified.  I might not be dying, ok, technically we are all dying, but my death is not known to be an event to happen anytime soon. However, I am suffering daily from an incurable disease. One that is continuing to puzzle doctors and piss me off. I feel this obligation to "be tough", "stay strong", and "fight" through the pain for the mere benefit of the people who have to "deal with me" on a daily basis.  I have to put up a front like I am bigger that this disease and that the pain doesn't get me down at all. I pretend that I have hope it'll get better, even though it's unrealistic to think that I will get better. I will have good days, but I will not ever be rid of RA and it will continue to cripple me until the day I die. My RA is severe, and hasn't responded to any treatments that are supposed to slow the progression of the disease. I have days where my husband has to do everything for me, and the kids, and himself, on top of having to work all day to provide an income that I can't even help supplement. I can't walk all day at the Aquarium with my kids, I can't enjoy a boat trip out on the bay, I can't even go with the kids to the library without the pain tagging along for the ride. Yet, I do, not for me, but for them. I try to have fun. I actually do appear to have fun. I don't whine that I can't do it. I don't tell the kids that we can't do this or that, I just do it and put on the front that my pain doesn't bother me. For them, so that they don't have to feel the brunt of the side effects of RA.  They know I hurt, they know I have a hard time getting dressed and getting up and down, but they don't need to know that I can't have fun with them anymore. I am keeping my disability pretty for them, and I guess that's okay. Okay.

1 comment:

  1. Hi Bethanne! My name is Cameron Von St. James and I had a quick question for you! I was wondering if you could email me at your earliest convenience at cvonstjames AT gmail DOT com :-) I greatly appreciate your time!!