Things I Don’t Want to Hear
People mean well. I will start off by acknowledging this fact. But nevertheless, there are things I still don’t want to hear from strangers.
Frequently when someone new learns that I was diagnosed with rheumatoid arthritis at age two I get a whole slew of questions about how I got it or what caused it, what they did to treat the condition, followed by lots of unsolicited advice about how special diets, vitamins, prayers, and so on could have cured me.
Now at age 40 I think that I have heard it all—dozens of times. I honestly don’t think I could hear any new questions or listen to any new advice. It has all been said and, frankly, I didn’t want to hear it the first 100 times anyway.
I started by acknowledging that people mean well partly to remind myself, because it is frustrating to hear the same nonsense over and over again. First, because I do not have a time machine that would take me back to administer whatever cure these people suggest. Second, because nothing they tell me has a basis in scientific research or efficacy findings about treating RA.
My doctors still don’t know why I developed RA and why it appeared at such a young age. There was no obvious trigger and no one else we know in the family had RA as a child. I do have relatives with other autoimmune diseases, though not with the severity that I have experienced or for the length of time. It still really is a guess. Somehow I was predisposed. Somehow I was chosen for this illness as a child.
I think what irks me the most about all the unwanted recommendations for what my family and I should have done to cure my RA when I was a child, is that we did try all those things and then some. We tried everything the doctor recommended for treatments, experimented with diet, exercised my joints until I thought I would fall apart, and endured the prayers of friends and strangers alike. Nothing slowed the progression of the disease. It was not for a lack of trying!
To me, the implication of these strangers’ questions and suggestions was that I or my family failed in some way. That it was somehow my fault that I was a sick child. That it was somehow my fault that I couldn’t get better, no matter the effort. That somehow if different decisions had been made, I would be recovered from RA and not live with a severe chronic condition and lifelong disabilities. It’s the judgment of pity for me and superiority for themselves that I truly and deeply dislike.
I probably read too much into these comments that likely don’t have much thought or consideration behind them. But I don’t think it’s too much to ask for people to think more before they talk about things they don’t understand or know about. Do they honestly think I can time travel? Do they think I have not done all I could to be well? If they took a pause, they may think twice about such questions and comments.
It can be hard for me to remain patient. I try to strike a balance between listening and also politely indicating this is both past and none of their business. I try to treat them more respectfully than I think they are treating me in this moment. Maybe it especially angers me because I am willing to openly share my story and experiences, I just don’t want to hear ignorant judgments.
Have you managed RA fatigue better than you used to?