On a recent visit to my rheumatologist, we were sitting with a medical student when my doctor asked me to explain how I was two years old when diagnosed.
“See her small hands?” he asked. And she nodded.
“They are so small because she is underdeveloped due to the disease occurring at such a young age.”
Now why didn’t anyone ever tell me that? I am 40 years old and hearing this for the first time! That explains my small feet, my undersized jaw, and tiny shoulders too. I always knew my RA affected my bones, but never understood that having a severe case at a young age also affected my growth overall. Some bones are stunted more than others.
Some previous doctors also attributed my bones being small overall to taking lots of steroids for long periods of time. Perhaps it is a combination effect, but no one ever spoke to me about it before. In recent years I’ve learned more about how RA can attack the eyes. How a lot of people have thyroid problems (I have pre-symptoms) or may be more likely to develop cancer and heart disease.
I suppose some of these items are relatively new knowledge, but I also feel sometimes that a lot hasn’t been shared with me. Thanks to the Internet I study and learn a lot on my own. It’s good to have that knowledge resource and to share insights through the RheumatoidArthritis.net community, but I wouldn’t complain about doctors telling me more.
It may be that they assume I already know these things, these random factoids about living with RA for a long time. But I honestly don’t think this is why. I feel many doctors treat me like I’m on a “need to know basis.” They don’t want to illuminate my understanding of RA for fear of pointing out the countless problems and complications, the differences and disabilities.
But I feel like not knowing, not understanding leaves me in the dark. There are things I don’t understand about my own body and its history. Sure, I don’t want to be constantly worried about anticipating additional health problems. But some knowledge would be useful.
Throughout my life I have observed changes or patterns and then had to pursue explanations. For example, my husband actually noticed that my RA seems to worsen at the end of my menstrual cycle. It was only when we asked that a doctor said that evidence indicates RA can be affected by hormones.
Although every individual is unique, there’s more knowledge about RA than is often conveyed to the person living with it. I think we should be trusted more to learn and understand, even when it may be difficult to understand or hard to cope with emotionally. We truly deserve to know because we are striving to live with the consequences of a challenging disease.
It may be a long time before the health care culture changes, so in the meantime we need to empower ourselves to ask. When we notice strange things or changes, ask why and if there’s any information on it. Another approach is to ask multiple health providers for different perspectives on the same issue. I also always advocate for researching ourselves, especially now that so much thorough medical research is available freely online.
I’m curious what others have found out that were surprises to them. Did you ever guess at something or learn a revealing mystery later than you thought you would? Did you learn for yourself? Or did you learn from a health care provider?