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Why Didn’t Anyone Tell Me That?

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?

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

  • AppleRiver19
    2 years ago

    As I read through this article and subsequent posts I can’t imagine the frustration and blind spots that occur when you feel like information is on a “need to know basis”. My experience has been the complete opposite. My doctor has been informative, proactive and was able to diagnose me accurately upon my first visit and labwork results. I had several overlapping diseases. She met with both myself and my family to explain goals, medications & lifestyles changes. She pointed us in the right direction for information that was current and reliable while helping us set up a care team that understands where I am and what we are looking to achieve. She has always discussed the pros & cons and progression of the disease(s) I have. To be fair, I keep a journal that we discuss at every appointment and I have access to her via an app called HEALOW where I can ask questions and get in touch with her. This has made communication easier and conversations more productive. She is easily able to pick up patterns or instances in my journal that are RD related. We discuss them, sometimes we keep an eye on things, sometimes its a trend that needs to be addressed. She has never left me in the dark as to what is ahead based on my labs, my journal & disease progression. I would suggest maybe starting a journal that makes communication more effective and specific to you? I hope this helps.

  • Kelly Mack moderator author
    2 years ago

    Thanks so much for your comment, AppleRiver19! Your doctor sounds excellent! If only we had more doctors like that! I’d say that the biggest thing is having so many doctors over the years is that its hard for them to convey all they know, while also understanding that each individual has limitations on their knowledge. I find that I have to connect the dots among all these disparate experiences. A journal is a great idea, thanks! Best, Kelly

  • Kelly Dabel moderator
    2 years ago

    Thank you so much for sharing your insights and tips AppleRiver19! So glad that you have had such a great experience and found a doctor who, it sounds like, you really connect well with. Love that you are able to utilize technology to improve the ease and quality of dialogue with your doctor. What a great tip to keep a journal, I’m sure it’s proved extremely helpful and useful. We appreciate you sharing and being part of our community! Kelly, Rheumatoidarthitis.net Team Member

  • kat-elton
    2 years ago

    Great article! I agree- this community has taught me so much more about my disease and the crazy symptoms that can be related to it than my MD’s. It’s a rare occasion that a health care provider teaches me something, sadly.

  • Kelly Mack moderator author
    2 years ago

    Thanks kat-elton! Yes! We are like the PhDs for our conditions after living with RA for so long! Best, Kelly

  • GingerS
    2 years ago

    I think alot of Drs assume we know when we don’t. Especially the ones of us in the medical field. Many times I heard. “She’s a nurse.” Like that explains everything. NOT!! I had tears in my cornea. Which I later learned. Was from “dry eyes” from RD. Thanks to this site. I have learned much about RD. Even when I was working. I now know I was ignorant of what RD does to a person. I knew the diagnosis. The pain and fragile bones with end stage. But on a day to day level. I had no clue as to what my patients felt.
    When I go to the Drs. I have learned to ask questions. Give them the current active symptoms as well as discussing my medication. I make a list before each Dr visit. That way I will not forget.
    When RD started. I had to insist they find a diagnosis for the terrible pain I was in. As they were treating symptoms without knowing the disease.

  • Kelly Mack moderator author
    2 years ago

    Hi GingerS, so glad that you have found this site to be a helpful resource! I do as well. It is good to have a place to compare experiences and exchange knowledge, especially wisdom that comes from experience and not just the clinicians. Best, Kelly

  • Richard Faust moderator
    2 years ago

    Thanks so much for writing GingerS. It is good to hear the confirmation that unless one is really steeped in the most recent research or specifics about a condition there will be much that even a professional isn’t aware. You mention the questions you ask, so I thought you might be interested in this other article by Kelly on questions and preparation for appointments: https://rheumatoidarthritis.net/living/questions-for-the-doctor/. Thanks for being part of the community. Best, Richard (RheumatoidArthritis.net Team)

  • Mary Mann
    2 years ago

    Doctors do use ‘need to know’. When I was first diagnosed four years ago, my doctor addressed my symptoms and my current treatment. She never explained to me what was happening. I am a person who really likes to understand the big picture. She didn’t even try. I explored for myself. I am fortunate in that I am an RN and can understand medical explanations. Understanding your big picture is important to being able to manage, get through tough times and move forward.

  • Richard Faust moderator
    2 years ago

    Thanks for writing Mary. It can certainly be frustrating when someone else is deciding for you what is important to know. Thought you might have an appreciation fro this article from one of our contributors writing about her experiences with different rheumatologists and the reality that not all doctors are created equal: https://rheumatoidarthritis.net/living/doctor-knows-best-or-does-he/. Best, Richard (RheumatoidArthritis.net Team)

  • Ed Burgoyne moderator
    2 years ago

    I feel like RA is a large dartboard with the possible issues it can cause listed where the numbers should be. Just throw a few darts and those are the side effects that you could get.

  • MaryMF
    2 years ago

    I was the opposite, I have AS and possibly RA, I test positive for both. Plus fibro, and signs of sojgrens. My AS sign is my SI joints. I just out and out asked my Dr why, some of it is legal, unless there is some sort of proof they can’t really say some things, especially with AS. If you tell them the symptoms it also prevents any power of suggestion of them telling you the symptoms. I was lucky to find a good rheumatologist, we go over my list and discuss solutions. Twice I had to go to emergency and they never figured out the problems, when I told him he knew immediately. Coming here and seeing other people feeling like you is vital, people not understanding what we go through is one of the top reasons why these diseases are so horrible.

  • Richard Faust moderator
    2 years ago

    Hi MaryMF. Sorry to hear about the multiple diagnoses. Unfortunately autoimmune conditions are all too susceptible to comorbidities. Thought you might be interested in this article from our editorial team on comorbidities, including fibro and sjogren’s: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/. Glad that you are part of the community and find the information useful. Best, Richard (RheuamtoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    2 years ago

    Ankylosing Spondylitis was a shock to me. When I was a teenager my mom used to say stand up straight. I would try but really it never worked.

    Fast forward 38 years my back hurt so my rheumatologist referred me to a chiropractor. The chiropractor was working on me and he said how long have you had AS. I said what, then I do not. Oh, you must he said. Your back is curved so badly.

    I saw the doctor later and I asked about it. Well, sure enough, the blood work a full 10 years earlier showed I was HLA-B27 positive. between that blood work and now the fact i had lost 4 inches of hieght in 15 years as I bent foward. Yeah he the Rheumatologist said, I think you have anklynosing spondyltis in addition to RA. There you go. Count me shocked.

  • Sarah
    2 years ago

    I’m not judging, just wondering. What’s right for one person isn’t right for another.

  • Lawrence 'rick' Phillips moderator
    2 years ago

    Sarah, I knew I had RA at that point, but my back hurt so badly and the RA medications were not really helping. It was a good compromise.

    Turns out we later had to make a choice to treat RA or AS with biologics. We chose to treat RA, leaving AS untreated. Sometimes we take the best way in a sea of bad options.

  • Sarah
    2 years ago

    I’ve read a few places and was told by both my rheumatologists that people with RA should NEVER go to a chiropractor. Didn’t that hurt?

  • Kelly Mack moderator author
    2 years ago

    Wow! That is very surprising! Very glad that you found a doctor who could finally diagnose and hoping that treatment is helpful. Wishing all the best, Kelly

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