Since I've lived most of my life with JRA, I've had to take help that I'd rather not need just to have a successful life. And to be honest, my life in the eyes of some likely doesn't seem all that successful. I mean look at me, I didn't go to college, don't work, have no plans to work in the future (unless some medical miracle or treatment appears to me). But, despite that lack, I have rich life. I'm active in support groups, help out with a newsletter, and am hoping to start advocating for people with chronic pain. I have hobbies such as genealogy and reading. I have understanding friends in my life who value me for me not for what I can or cannot do. And most of all, I have two wonderful males in my life that are more important to me than anything else. My husband and son are two of the most special people in the world.
When it comes to asking for and getting the help I need, I had to learn growing up that someone with a chronic disease cannot always go it alone. Yes, doing all you can for yourself is important. The world is rough. But there also needs to be a balance of accepting help and not taking advantage of that help. What gets me are adults with RA who have this attitude that kids with RA shouldn't accept certain helps like IEP and 504 plans in school. These are people that have no clue what it is like to grow up struggling in school. These are people who were diagnosed as adults and therefore had more mature coping skills than a teen would. Why in the world would one of them tell a teen not to accept help when it is needed? Teens have it rough already without throwing in chronic illness. Adding that makes it much worse. I doubt I'd have done well in school without some things I was given such as a second set of text books, extra time between classes, an elevator key and extra time on tests if I needed it. I used the extra time between classes and the extra books a lot. Because high school is what it is, I didn't use the elevator key all that much because well frankly the other kids hassled me over it. It shouldn't be up to a teen to advocate for themselves what they need. But, they are capable of knowing what they need. And if need be, quite capable of getting it.
But who is to say that doing that is taking the easy way out? Would an adult with RA tell another adult that using a handicapped sticker is the easy way out? Would they say a cane or other walking device is the easy way out? A wheelchair? No, those devices tend to inspire a degree of pity in people with the ability to be fully mobile. How about pain meds? Those the easy way out? I for one don't think any of that is the easy way out. They are just tools used to cope with chronic disease.
The goal of proper and aggressive care with early RA would be to avoid the need for using those items but no one should shame a patient that does need them. I personally could care less what people think of me. If I need help, I accept it. But I don't stand for adults telling a teen to try not to rely on help, basically because the world is a harsh place and no one should feel entitled to help becausre they have a chronic illness. That just doesn't cut it with me.
When it comes to asking for and getting the help I need, I had to learn growing up that someone with a chronic disease cannot always go it alone. Yes, doing all you can for yourself is important. The world is rough. But there also needs to be a balance of accepting help and not taking advantage of that help. What gets me are adults with RA who have this attitude that kids with RA shouldn't accept certain helps like IEP and 504 plans in school. These are people that have no clue what it is like to grow up struggling in school. These are people who were diagnosed as adults and therefore had more mature coping skills than a teen would. Why in the world would one of them tell a teen not to accept help when it is needed? Teens have it rough already without throwing in chronic illness. Adding that makes it much worse. I doubt I'd have done well in school without some things I was given such as a second set of text books, extra time between classes, an elevator key and extra time on tests if I needed it. I used the extra time between classes and the extra books a lot. Because high school is what it is, I didn't use the elevator key all that much because well frankly the other kids hassled me over it. It shouldn't be up to a teen to advocate for themselves what they need. But, they are capable of knowing what they need. And if need be, quite capable of getting it.
But who is to say that doing that is taking the easy way out? Would an adult with RA tell another adult that using a handicapped sticker is the easy way out? Would they say a cane or other walking device is the easy way out? A wheelchair? No, those devices tend to inspire a degree of pity in people with the ability to be fully mobile. How about pain meds? Those the easy way out? I for one don't think any of that is the easy way out. They are just tools used to cope with chronic disease.
The goal of proper and aggressive care with early RA would be to avoid the need for using those items but no one should shame a patient that does need them. I personally could care less what people think of me. If I need help, I accept it. But I don't stand for adults telling a teen to try not to rely on help, basically because the world is a harsh place and no one should feel entitled to help becausre they have a chronic illness. That just doesn't cut it with me.
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