I am fiercely independent and just a bit stubborn (actually, quite a bit!). While I live with severe rheumatoid arthritis and disabilities that many would perceive make me dependent, I treasure my autonomy.
To some extent, I’ve become accustomed to people feeling like they could control me, boss me, make my decisions etc. This is not a new experience! But my parents raised me to be independent—to think for myself, to control my own body, to make my choices. Even as a child when someone thought they could boss me, I’d have none of it.
I think there is an extra layer of people thinking they can control someone who is perceived to be a patient (this happens a lot in medical settings) and someone with disabilities. It happens a lot that someone will speak about me to my husband when I am sitting right there. He rolls his eyes and I answer. While this is annoying, it is not the worst I have experienced.
The RA medical battle is a huge one.
I am the leader of my health decisions and care. Certainly, I consult with my husband, but he says ultimately that it is my body and these choices are up to me. We do a lot of research and I am always current on what’s happening. Even as a small child I could recite my medications and dosages because my parents taught me that I needed to be responsible for my health.
But so many times in a hospital, rehabilitation facility, or even doctor’s office I run into people who think they can control me and know better than me. It absolutely drives me crazy. If I encounter this in a doctor’s office I never go back and I tell them exactly why. In hospitals or rehab, I have to fight to stand up for my independence.
For example, one time a nurse brought me a weekly medication for my rheumatoid arthritis on the wrong day. I explained and she didn’t believe me. I refused to take the medication. But instead of checking her facts, she went and threw out the pills that I had paid for and brought to the facility. It was awful and made me so angry. I can’t say that I ever got an apology or satisfaction, but at least I didn’t poison myself by taking the potent medication too soon.
As sad as it sounds, I am used to these medical establishment battles and expect that I will see many more. I am prepared for them. But I struggle with the regular world battles because to me it is a violation of treating me respectfully as a human being.
Unfortunately, I have a recent example. As we debarked an airplane, my husband was pushing me in my manual wheelchair. An airline employee rushed up and took control of my chair saying that they could not let him drive me. I said no, that my husband was the experienced driver and the person whom I had chosen. But she did not listen to me and did not let go. In a few yards, we reached the door and my husband took over so I did not fight, but I wish I had.
No one should be able to push my wheelchair without my consent. No one should think it is OK to physically assault me like that. She let everyone else walk off the plane on their own, when it is my body in my wheelchair I have the same right to do so.
As people who may be perceived as sick or disabled, it’s important that we stand up for our autonomy. It’s a fight I’m willing to fight because my independence relies on me winning.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?