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Autonomy

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • rockcandi
    1 year ago

    I too am fiercely independent, when it comes to not asking for help and pushing myself to do things that maybe I shouldn’t be doing. But for a long time I had a really hard time making my wishes known to my doctors and standing up for what I believed I needed. If, after a couple visits, the rheumy wouldn’t actually listen to what I was asking for, I’d move on. Or, if I did stay it was bc at least that rheumy would try a different med, but it wouldn’t be what I was asking for. (I knew for years I needed a biologic but they all wanted to keep me on MTX or an immune supressant pill.) But then I gave birth to my son who was a very demanding newborn and infant. And enough was enough. I started demanding that we find something that would work instead of going back to the same old things that hadn’t. I didn’t have time or patience anymore to mess around. I had a 7 week premature baby that had digestive problems and wanted held all the time or he was crying. He has sleep issues and has a hard time staying asleep once he’s fallen asleep. And I had a bad flare starting immediately after giving birth. My son taught me to stand up for myself and for him simply by needing me to. I was switched to a different rheumy when he was 3 months old bc the current one was being transferred to another clinic w/in the university hospital. Although I did like him, I quickly found out that it was a huge blessing to have the rheumy I have now. It’s been over a year and a half with her and I don’t have to demand with her. She isn’t satisfied with me being and feeling simply okay. She fights for me (with insurance company) when she feels my progress isn’t “good enough”. We’re still working on finding the right drug bc we lost the battle with the insurance company. But at least I know it’s not me against my doctor. It’s me and my doctor against the diseases & the insurance company.

  • Kelly Mack moderator author
    1 year ago

    Rockcandi, thanks so much for sharing. So great that your son has helped you fight for your health! And really glad to hear that your doc fights for you. Keep up the good fight! Best, Kelly (RheumatoidArthritis.net Team)

  • Carla Kienast
    1 year ago

    I totally agree that people in wheelchairs or who have other visible “issues” are often treated as “less than”. (I’ve only seen it, you have to live with it.) While most of these offenses are caused by idiots (some perhaps well-meaning), unfortunately there is another side. Many companies, especially travel- or medical-related, have policies (often created by other idiots) that impose things on people in wheelchairs or are otherwise restricted. These policies are meant to protect the company rather than give dignity to the individual. To use your experience as an example, if you had tumbled out of your wheelchair while exiting an airplane, you could have sued the airline for not having assistance available. They may not care if you feel like you’re being treated as an object rather than a rational human being, but they care a lot if they get sued and a bad PR rap. It’s bad enough that we have health problems. Having societal problems because of them is adding insult to injury. Did no one learn anything from Stephen Hawking?

  • Richard Faust moderator
    1 year ago

    Hi Carla. I know what you mean about airlines claiming they have to take over the chair for liability reasons, but this is actually a legal grey area. Airlines claim they have to do this for legal reasons (I’ve heard this more than once), but as you point out, the only legal reason is their own protection. A wheelchair is considered an extension of the person and thus it is considered that the individual has the right to choose who can push it. The airline fulfills their obligation in offering the service, if Kelly tells the airline personnel that she wishes for me (full disclosure for readers – I’m the author’s husband) to drive the chair that should be the end of the discussion (she has turned down the service and assumed responsibility – as you pointed out, they made the assistance available). A bigger problem is that airline personnel often do not have clear guidance on how to handle chairs and thus assume they must take over the chair, regardless of a person’s wishes. This may be the next step in airlines realizing good will and positive PR comes from proper training and communications.

    The reality is that we are glad to have the assistance available. It simply should be the choice of the person in the chair to avail themselves of it or not. In fact, just this year we said yes to the assistance when a plane was boarding on the tarmac and the ramp was quite steep. The gentleman from the airline was quite a bit larger than me and I thought he could better handle the push, while I took the front and assisted Kelly from the chair onto the plane. It always works best when everyone works in agreement. As you said, it is best all around to treat the disabled as rational human beings and not objects. Best, Richard (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    1 year ago

    I am also the leader of my health care team. Sheryl is my second, and my sons are thirds, then comes doctors, nurses and the rest. I ask my doctors for their advice, but they are hired guns. I hire them for their expertise, much like I hire a mechanic or plumber. I value them and what they do for me. I am happy with the team, but I am just as likely to move on if I need to do so. I do insist on one thing above all else. Members of my health team must laugh, a lot.

  • Richard Faust moderator
    1 year ago

    I like how you describe the relationship Rick. I appreciate what you said about hiring for expertise and valuing what the medical team can do for you, but remaining the decision maker. I have seen people say things along the lines of never take advice from those that don’t have your experience, but no one ever truly has someone else’s experience and a lot of knowledge would be lost limiting in this way. As long as the individual controls what to do with the advice they can have the benefit of getting it from all kinds of experts. On laughter, Kelly and I actually have a good time with her rheumatologist. Best, Richard (RheumatoidArthritis.net Team)

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