Inside Story of a Young Person Living with Juvenile Rheumatoid

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Today’s blog is my response to an email from a reader about an appointment with her daughter’s rheumatologist. This family travels for hours to see an expert pediatric doctor in one of the best hospitals in the country.

Hi Kelly!

I guess when they say all good things must come to an end, IT’S TRUE :(

I can’t even begin to tell you how discouraging, frustrating, disappointed, angry, tearful a doctors appointment could be

We went to (city) due to the amount of pain K was in, of course we saw him two weeks earlier than expected. The pain has been unbelievable and keeping her from doing what she loves to do (SPORT) & SCHOOL. :(

juvenile rheumatoid knees swellingThe doctor comes in and checks her over, checks her range of motion in her knees, ankles and looks at her back. He then tells her to sit up and says, “I think it’s time we have this conversation. I have given you may different meds with the Enbrel and none of them seem to be helping you, I don’t want to give you pain meds because that forms bad habits and even the prettiest nicest girls like you and get into trouble with them. Addiction is a terrible thing and it ruins lives. (We never asked for pain meds either.) And there comes a time when you have to learn how to deal with this pain on your own, because when you tell mom, she tells me and I don’t want to add another med because the side effects outweigh the benefits of some of the meds.”

After the speech about learning to deal with this on her own, he then said to K, “If the pain is still bad let mom know.” I said to him, you don’t want my daughter complaining because I bother you with her pain, and yet you want me to contact you when she’s hurting? How does this make any sense? If she’s not allowed to complain then why would I inform you? If she has to suck it up, then I will too and will stay up all night with her to comfort her, he told me not to do that!! I told him he will not be hearing from me. I also said to him, so basically this appointment was to let us know that we were bothering you too much and K should learn to suck it up and deal with her pain???

With no words of a lie Kelly, he giggled and said, “Well I’m sure we can find better words!!”

K was crying and so was I …my husband was extremely quiet. The doctor was saying stuff to K “Look at your mom, she is biting her tongue and is really upset with me, I may have to take her to the surgeon next door to fix her tongue, and your father he at a loss for words?”

I told him I was really upset with him, and “surprised that he would even say stuff like that to us. I also told him that this appointment is starting to head in the direction of what all the (city) doctors have said to us, 1. Your pain isn’t that bad 2. I’ve given you all I can, none of it’s working, 3. What’s next Dr.? Are you going to tell me that I need to put her in behavioral intervention too? He said, “NO!!!I believe she has pain; she has JIA, her knee and ankles have limited motion and swelling, that’s why she’s on the Enbrel, which is working because the disease hasn’t worsened her joints. I want to see you back in a month!”

All this is going on even on meds so he can’t do anymore to help her??? At one point he wanted to put her on the Remicade and now he doesn’t???

I just don’t understand rheumys and this disease!!!

So needless to say K hasn’t improved any since we saw the doc 10/8 the symptoms continue and I just go with the med plan he has for her…Enbrel!! Why do these docs think Enbrel and Humira are the magic meds and that your RA will be fine in NO TIME? 18 months on this med and she continues to swell have limited motion and pain. Oh well I guess we will never find the perfect doctor, but I am NOT GIVING UP THIS FIGHT. I will FIGHT until it KILLS ME and I’ve exhausted all measures.

Sorry for bending your ear…just thought I’d give you an idea of what happened at our last rheumy appointment I will also send you a pic of her knees…it’s amazing!!!



My response

Dear N,

I read your letter on my phone last night in bed because when I see that an email from you came, I have to check it right away to make sure K is ok. Of course the first thing I want to tell you is that I’m sorry you as a mom are watching your child suffer. As a mother, I know how hard that is and that you’d do anything to take away her pain and health problems. Did he say anything about the chest pains?

I think of your family often. You’re doing a wonderful job getting K the best care possible and it helps her so much to have a supportive family. She is so strong, and like I told her on her birthday, I’m so proud of her. Please give her a hug from me.

As far as your appointment, I can only guess what’s in this man’s mind that made him behave like that. He sounds frustrated, but I’d hope either his parents or his mentors would’ve instilled some empathy. KB and I try to laugh about the fact that there are so many of them made in the same mold, with the same attitudes, mannerisms, and even similar looks! But seriously…

4 common problems in rheumatology contribute to your experience:

1) The doc doesn’t know that he can’t tell what her disease activity level is by just looking at her.

2) The doc hasn’t been taught what the disease feels like for her, or lived with her like you have in order to learn.

3) The doc has been taught that the disease is not as painful or debilitating, or as constant as it is for many patients.

4) The doc has been told by pharmaceutical companies (via symposiums at conferences, reps who visit him, literature he’s been provided, and advertisements) that the treatments work, like you said, to take most symptoms away.

Again, I’m sorry you’re going through a struggle to get decent care on top of the struggles of the disease. You’re both stronger than you know, and there will be better days. Thank you for letting me share your letter – I think it will help someone to know they are not alone. Hopefully doctors who read this blog will make a personal pledge that they will not treat a person in a dismissive way, even if the person is their patient.
doc says its in his head

I can’t help but wonder how much these two things contribute to the behavior of docs who don’t understand RD:

1) Inadequate training to help them understand the experience of the disease, as experienced by patients (and their families)

2) Money that’s been wasted for decades researching whether PRD are exaggerating symptoms

POSTBLOG: Listening to this doctor speak, you might never guess how he acts inside the exam room. We’ve all heard insider stories of how healthcare professionals speak about patients behind their backs, so maybe it wouldn’t surprise his fellow rheumatologists either – I don’t know. But I do know I receive many letters like N’s. And I’ve met several doctors like this one. Read about another young person with Juvenile Rheumatoid whose doctor thinks RD is not so bad: Some Rheumatologists Don’t Understand How Much It Hurts.

Recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Friday, November 1st, 2013 at 4:44 am and is filed under The Real Rheumatoid Disease. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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