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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.

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