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From Meek Mouse to Mighty Mouse: Or How I Grew My Voice As a Patient

I’m not sure what the best personality style is for someone who lives with rheumatoid arthritis, but I know for sure shyness doesn’t help. I know this because as a child I was incredibly shy, so shy that when my Mom would ask me to check-in at the doctor’s office I would tremble at the thought of speaking out loud to the grown-ups behind their desks. I would always answer “fine” whenever I was asked about how I felt because I didn’t want my body to be the center of attention.

Being in pain exacerbated my meekness, as did gym class, recess, ice-skating, basically any activity that required physical prowess turned me into a quaking mess. The irony in all of this is that without the JRA, I’m convinced I would have been some sort of athlete; no matter how funny I look limping up a hill, that’s when I’m at my happiest. I’m not sure to this day if anyone else put together my shyness and my JRA and wondered if there was a correlation but to me it is an obvious one – most everyone with RA knows that pain changes their personality in some ways, and in my case, it shuts me down, turning me into a turtle seeking comfort in my shell.

Finding confidence and coming out of my shell

It wasn’t until I was well into my twenties that I began to come out of this shell. I got better at talking about the JRA to a few close friends and family, and began to live a life of my own away from the place I grew up; I came into my own. I began working and being independent felt great. I needed a lot more rest and sleep than my peers, but I was able to fit that in between work and fun adventures. Life was much better.

Losing my confidence at rheumatology appointments

But the minute I went into a rheumatology office I became a meek kid again. I forgot my new-found confidence and instead began to use the word, “fine” again when I was asked how I felt. I couldn’t shake it, and for years I told myself I would be bolder, stand up for myself, speak up when something didn’t feel right or if I disagreed with the treatment plan my doctor had decided on. I never did.

Why I decided to advocate for myself more

Then something happened. At the time I was working as an occupational therapist in a hospital rehabilitation department. One day I saw a patient who changed my thinking and my life. Her name was Carol, and she had a list of problems listed on her chart so long that I wanted to cry looking at it. On that list were a number of autoimmune diagnoses, along with obesity, high cholesterol, and other issues that I knew were side effects from the many medications she was on. She was in the hospital recovering from a knee replacement, and when I went into her hospital room I had to smile – she was such a beautiful, kind person.

My friend Carol, the ever compliant patient

After she left the hospital we stayed in touch, and I became friends with her and her husband, often visiting for tea or a chat. During those visits, we would sometimes talk about our physical issues, and from those conversations I realized something. Carol had been a compliant patient who never told her doctors when she was questioning what they did for her. She allowed them to treat her with medicine after medicine, do tests that ended up hurting her, and when she would tell me these stories, I would see the sadness and just a glimpse of despair about her situation leaking through her kind face.

Carol’s passing put things in perspective for me

A few years later I got a call from her husband Max. I had moved on to a different state by then so we were phone buddies. Max told me that Carol had lost her battle with her diseases. Immediately, I thought, “This can’t be me.” I knew that no matter how easily I shut down during MD appointments, I had to start doing better at advocating for myself.

I have to speak up for myself

I think of Carol often, and how she tried to be a compliant patient, doing everything her doctors asked of her, saying yes every time they wanted to do something to her. I think of the one time she admitted to me that some of the medications and tests she agreed to were harmful, and she knew that before she said yes, but agreed anyway because her doctor was so insistent. And every time I think of this beautiful, courageous woman I remember that I have to speak up. I have to because if Carol were here today, she would be telling me this herself.

Advocating for myself makes for a better medical experience

So now when I am at an MD appointment and my doctor wants me to try a drug that I know hasn’t worked in the past, or am advised to do something that I feel will hurt more than help, I say so. I’ve realized that advocating for myself during medical appointments is a good practice for speaking up about my disease in other situations. When I speak up with my doctor, I end up having a much fruitful visit and leave feeling much better than when I came.

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

  • stacy1992
    6 days ago

    Is anyone prescribed pain medication with there RA meds?

  • Mary Sophia Hawks moderator
    4 weeks ago

    Kat,
    Great article! You touched on an important part of our journey. We have to advocate for ourselves. No one else understands or can verbalize it better. If you are really uncomfortable, you can write your thoughts down and present the document to your doctor at your appointment. This works really well, and often doctors are very pleased to get the information. If they aren’t, it’s time to find another MD .
    Thanks for bringing this out.
    Blessings,
    Mary Sophia

  • Lawrence 'rick' Phillips moderator
    1 month ago

    Kat, I love your blog. For years I was so shy I could barely speak. Burt then I got a job and boom I had to talk in public. Really talk in public. Today I love speaking out. I love talking in front of big audiences and i enjoy doing it in big environments.

    My current outlook is far better, than the one I had a child. Unfortunately not everyone agrees with me. Namely my wife. She says hey Rick sit down. LOL

    Well you cant please everyone so you got to please yourself – (Ricky Nelson – Garden Party)

    rick – (site moderator)

  • CynthiaV
    1 month ago

    I’m so sorry for the loss of your friend Carol. She must have been a wonderful, kind person. I too had a similar experience but with my parents. They came from the generation that placed doctors up on pedestals, one step below saints. They never questioned anything, the doctor was always right. My personality is different. I am shy but not when it comes to matters of importance like health and well being. Even as a young person I became the voice for my parents always asking questions and horrors! even disagreeing with them at times. As my parents aged I was their #1 spokesperson. Accompanying them on office visits, etc. and tracking down information and differing available treatment options, even drug and treatment studies.

    Once by my intervention I actually saved my mother’s life demanding a procedure not be put off but performed immediately. The next day the surgeon who operated on my mother to remove 18″ of neurotic intestine informed me had the procedure not been performed when I insisted my mother would have died that night of septicemia. Her “doctor” had told her it was food poisoning. I had insisted she go to the ER.

    I think what is important is that patients think enough of themselves, love themselves enough not to be frightened off by white coats and diplomas on the wall. That they push themselves to speak up and that we realize that doctors are as human as we are filled with doubts and foibles. Like us, they all make mistakes and some are governed by less than pure motivations.

    At times I have felt that I was being treated like a walking experiment my outcome to be written up in a medical journal. A bug under a microscope. That was my cue to run far and fast from that doctor. Blessedly, I have found a team of compassionate, caring and skilled physicians. It took work but it was worth the time and effort. Yet still I question and discuss my options.

    One last thing. The relationship between doctor and patient, especially that of rheumatologist and patient is by nature interconnected. Communication must be above average, respect and trust flowing from both sides. The illnesses are chronic so the relationship must be lifelong. Yes, it the responsibility of the patient to advocate for themselves but it is also the responsibility of the physician to recognize and challenge a reply such as, “I’m fine” or question a too easy acquiesce to a course of medication or treatment. I tried covering up my issues to my rheumatologist once and he flat out told me to stop lying to him. He could tell I was not. So place blame on both ends. Both must do their part to ensure the greatest health potential and trust of the patient. It’s not easy at first to question or dissent but it is imperative to your health and spirit. Believe me, it does gets easier.

  • kat-elton author
    4 weeks ago

    Hi Cynthia V,
    Thanks so much for your comments, you really have made me think of the situation differently. I can relate so much to your experiences, and it sounds like you embody what has taken me so long to figure out! Thanks again! Kat

  • CynthiaV
    4 weeks ago

    You’re welcome Kat. I’m glad my words have helped you. I always enjoy reading your posts. Gentle hugs.

  • Franki King moderator
    4 weeks ago

    Thank you for sharing, @cynthiaV! You are a beautifully eloquent writer with a great story and message. How amazing that you saved your mother’s life!

    I am still working on being more vocal with my doctors but also on finding a team of doctors that I trust to be vocal with me in return.

    Thank you for being in this community with us!

    Best,
    Franki, RheumatoidArthritis.net Team

  • CynthiaV
    4 weeks ago

    Thank you Franki! You are so kind. This community is very important to me. It is a warm, welcoming place filled with kind, understanding people, warriors. It is the first place I come to when I feel alone and hurting. The one place I visit to chat with others who need prayer or just to be lifted up from the burden of chronic illness even for just a moment. Knowing that even just one person understands what you are going through makes all the difference. I always step away better for my visit.

    Best wishes to you as you find your voice and your team. Remember, your effort might not show such immediate results as my mother’s but in the long term it might. I know if I don’t feel comfortable with a treatment plan it’s more difficult to follow it. That is something my doctor needs to know. There have been times too I haven’t been 100% sure of starting a new med but after a frank discussion with my doctor and some compromise I’ve discovered the med actually worked! My rheumy was right! I can do that and be invested because I trust him. But trust comes hard. I’ve been with my doctors a long time. Trust builds.

    My rheumy and I have weathered a lot of storms together. Two things he said to me early on proved my trust. At my first appointment after he looked at my records (he was my 3rd rheumy), examined me but most importantly listened to me talk, just talk he told me I was no longer alone in this battle, he was going to help me. I cried like a baby I was so relieved. No other rheumy had ever said that to me. Then he told me what had gone wrong with the others. He said they weren’t committed to me. He was the one who explained the lifelong commitment a doctor must have to treat a chronically ill patient. Funny, I’d never thought of that. Then he told me he was committed to my lifelong care. That was 17 years ago. He’s still as committed to me today as he was then, probably more so.

    That is what I pray for you and all who suffer with chronic illness. A compassionate, caring and skilled physician committed to you for life. Don’t give up. Keep searching and keep advocating for yourself. You are so worth it. Blessings Franki…

    PS… btw, my rheumy is a D.O. In fact, three of my doctors are D.Os. I prefer how they work with the body as a whole, synergistically. So don’t make the mistake that a great doctor has to have a M.D. after his/her name.

  • Leanne Donaldson moderator
    4 weeks ago

    I agree with you so whole-heartily @cynthiav ! You made so many great points. My parents often believe, as yours, and were raised with the notion of infallibility when it comes to doctors. You don’t question, you just follow their instructions. But we have learned, often the hard way, that we need to be informed patients that foster an open and honest dialogue with our doctors. We are interconnected and respect and communication is a two-way street.
    I am so glad that you were able to put your skills to great use to save your mom! That is remarkable. Having the ability to advocate in a respectful and open way with doctors is a gift that should not be easily taken for granted. Cheers to you for finding the right health care team to surround yourself with. I hope everyone is working toward to same goal of managing the RA as best as possible. Take care, Leanne, Community Moderator

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