If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease | Rheumatoid Arthritis Warrior

If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease

What if the gloves never come off and no one ever knows. Then you end up with a serious disease that everyone thinks is no big deal; it’s just arthritis.
But who wants to take them off? I sure don’t.

Professional patient days

Overhead lampsToday was one of those professional patient days – when you have to spend time getting medical care specifically because you have a chronic illness. It’s much different from acute care, but I’ve never talked about why. By the time I got home today, I wanted to crawl under the covers and hide. I actually did for about five minutes until Katie Beth brought me a cup of coffee.

I don’t think I could ever really explain it to you. In a way it’s like “the gloves need to come off.” If I wrote about how some days are with this disease or the ways people react to it, those not “blessed with Rheumatoid disease,” as some patients say, would likely be upset. But they are the ones who need to hear this story. The gloves should come off now and then, or they will never hear the truth.

Hour after hour and irrational knees

When I got out of bed, my knees didn’t straighten. And, it used to take an hour of sitting with them bent to hurt this bad. Looking like a person twice my age, I dragged myself to the bathroom to wash up and get dressed for an appointment with Dr. Good GP. One reason doc is good is appreciation for keeping patients (me) as well as possible. And that was the reason for this appointment. I wanted to get some preventive care before I start another treatment for the Rheumatoid, and doc agreed: a new TB test, some vaccinations, and some blood work.

I waited over an hour, but that happens often and the patients don’t seem to mind because the staff are caring. I always waited 90 minutes to see Dr. KBC, my first rheumatologist, but that was different because the appointment was spent talking about the doc’s family, problems, or philosophies… This morning we sat in an outer hallway since the waiting room was crowded. Sitting on low park benches, Katie Beth worked on her laptop and I answered comments on the iPad.

When the nurse called me back, I got up from the low seat expecting to follow behind her. But my knees only straightened halfway. None of my joints ever move normally anymore, but sometimes it’s bad enough to surprise even me. I heard myself apologizing as KB picked up some of my stuff. I could feel eyes staring on the way through the office but I was more worried about not falling.

The nurse did a long interview to update background stuff. Doc loves EHRs and is fully computerized. No, I never smoked. Healthy family history. How much do you exercise? I would love to…

Finally, the doc. “Are you doing better?” (When I am any better, the whole world will hear from me quickly.)

“No, I’m the same. Gets a little worse slowly over time.”

Doc looks at KB, “Does she get worse?” KB has no idea what to say. Watching her squirm, I suddenly realize I’ve trained her in the same stoicism and minimizing that I do. The gloves never come off. For years, she’s watched me be able to do less every month than the month before and I’ve watched it break her heart. But she can’t think of a thing to say.

I alternate the gentle hold on my wrists and my fingers because they hurt. I gaze down at my slightly crooked, but unswollen toes. I can’t move any joint in my body normally, but I have no way to show that to the doc. Doc looks puzzled. “How well can you sleep?” I sleep very well. “But are you energetic…?” doc laughs. My fever is climbing, but I don’t mention it.

Previous times I’ve tried to explain the Rheumatoid symptoms. But not this time. Head cocked to one side, doc looks puzzled. I can see the doc that I’ve known for years struggle to decide whether there can possibly be anything wrong with the joints of a woman who just looks tired, not swollen this morning. A struggle because doc knows me as a smart, sensible, together woman – who doesn’t always look sick. But says she is. There’s more, but I can’t quite get the gloves all the way off.

I love this doc for helping me when I needed it. For never saying out loud the doubts I know are there.

But I want to be believed and understood. There is bursitis, tendonitis, and synovitis all over my body. And just the words “all over my body” sound irrational. But, it’s the disease that’s irrational.

Doc looks away as I struggle to stand and go down the hall for my shot. The knees straighten partially.

Every movement I make is difficult because of stiffness, weakness, or limited range of motion. Just because I don’t cry out doesn’t mean I’m not in pain. Could you cry out all day long? If the pain never leaves, you have to learn to tolerate it, and that’s what we do.

I hardly ever say a thing about symptoms that are always there. Because I know they sound ridiculous. Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?

I’d like to hear from some caregivers that have dealt with trying to understand us when have to hide so much of it to try to not sound crazy.

I left the office with caring people who just can’t comprehend what this disease is like to go to the lab at the hospital where they don’t seem to care about making so many errors in just our few visits. They lost my son’s anti-CCP test, disposed of my urine sample because they misspelled my name on it (delaying antibiotics for a serious infection), and failed to perform or read my bone scan properly. But that’s not why we dislike the lab there. We dislike the lab because even though I’m nice, they’re rude and physically rough.

But there are few options for labs and this is next door to the doc. Let’s get these fasting labs over because it’s 11 o’clock and we’re starving.

The highchair. “Can you sit all the way back?” No, I’m sorry. I know that irritates them, but there is no way to do it and my blood can be taken from my huge healthy veins even if I don’t try to force my hips and knees back in the high chair.

Down comes the bar across the front, forcing my shoulder up. “Can’t you straighten this elbow more? Lift this shoulder higher.” Smiling quietly, I take deep breaths. The tourniquet tight above the shot… but that’s okay it will be over quickly.

“I don’t feel so good,” the room got dark. I’ve only fainted once and it was giving blood.

“That’s why we tell you to sit back in the chair!”

KB says she’s worried and loudly requested someone bring juice. I hadn’t noticed there were so many vials.

In a couple minutes, I’m walking with bent knees to a dirty bathroom for a urine sample. Using pieces of paper towel, I touch nothing. But still wash my hands at the employee sink – there is not one in the bathroom.

We are overcomers

My knees have calmed down tonight – as long as I’m lying down. My ankle and my toes are nagging. My neck and shoulders are loudly crunching every few seconds. I have to stop and rest my fingers every few minutes because they ache. My elbows just plain hurt. My eyes are burning-itching-stinging all the time. There’s been an unexplained rash on my leg for a year. Sometimes my heart beats hard and my blood pressure soars.

We live with many symptoms that for most people with Rheumatoid disease, never leave completely. But we rise above it all day long and talk about other things most of the time. We’re not over-focusing on the disease; it’s focused all its effort on destroying us. We’re constantly overcoming it.

The doc just doesn’t know.

I wish everyone, including my doctor understood more, but most GP’s don’t know much about Rheumatoid disease. I tell my kids all the time: You don’t understand. And thank God you don’t. I don’t really need anyone to know how bad it is – just to believe me if I say so. As I’ve said before, I’ve lived on both sides of this fence, so I know.

Tomorrow is another professional patient day. After I pick up my labs, I’m headed to talk to Dr. Tylenol, who I didn’t plan to see again. It’s sadder when it’s a rheumatologist who doesn’t understand, but I’ll smile and get through it.

Postblog: This is the longest post I’ve ever written and I hope some of you made it all the way to the end. It seemed like a good way to try to capture for you a few hours of being in my place.

Edit 9:02: Tiny edit to juice sentence because KB reminds me that she repeatedly demanded juice. I was unsure since was losing consciousness at the lab and she was asleep last night when I wrote the blog.

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Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

98 thoughts on “If the Gloves Come Off, We Might See the Irony of Rheumatoid Disease

  • April 8, 2013 at 8:36 am
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    Wow….up and reading Kelly’s email this morning and I loved the title “If the Gloves Come Off…..” It made me want to cry. We are so terribly “misunderstood,” “misdiagnosed.” “mistreated,” “misaccommodated.” (the list could go on)
    Thank you, Kelly, for putting it into words so beautifully.
    I have a wonderful GP. She gets RA for the most part, understands that subsequent testing is important. She gives me my immunizations (doesn’t ask what I need….insists on “You need….”) She just ordered an ultrasound of my carotid artery and abdomen because she understands the impact of RA on our organs. She does my blood work concerning minerals and vitamins and always has great recommendations.
    I have been seeing my Rheumatologist for almost 2 years, since I was first diagnosed. He is ok but I can see it in his face that he is baffled by the disease. He always has a line of drug reps in his office with their “goodies” for the staff….Starbucks coffee, cookies, muffins, lunch. I once commented to the doc that the drug reps should be catering to the patients – convincing US to take the drugs because they are good, successful in treating people like me, not because their lunch delivery got them in to see the doc. The other side of the coin is that the rheumy needs to know about the latest drugs and treatments so he can help me. Another double edge sword.
    Five weeks ago when I was at the rheumy we were talking about various symptoms and I asked, “Have you ever heard of the online website RA Warrior?” and the rheumy responded, “No. Did they come up with a cure for RA?”
    Sigh
    I left the gloves on or it would have knocked him out. I bit my tongue – hard.
    His words have haunted since and bothered me enough to seek out a new RA doc. I see the old rheumy this coming Wednesday and a new one on Friday. I carry my planner with me always…containing my treatment plan, how I feel each day, side effects, and always my questions. It is so important for me to have my questions written down; I check them off in the doctor’s office as we visit each one.
    Suggestions from my online RA family (you) for my visit with the new doc are welcomed!
    And, Kelly, thank you…for what you do, all of it, everything.

    Reply
  • April 8, 2013 at 11:03 pm
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    This Post brought tears to my eyes and I just cried, bawled like a baby.

    Reply
  • August 13, 2013 at 7:54 am
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    I love this story. I think we should all take the gloves off. Oh the joy of having an “invisible” illness.

    Reply
  • January 29, 2014 at 10:45 pm
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    I understand the loneliness. I am divorced. My 3 children are grown. I was a college professor when I became very sick. I loved my work, but had to retire because of RA. I am social, but cannot honor all commitments because of RA related problems that land me, often, in the hospital. I have a dog that I walk. My children live far away in different states. My mother is in assisted living. I dated someone for 3 yrs. who said — as he broke up with me– “your illness is a turn off.” Here is another irony: my ex-husband was an orthopedic surgeon. I lived with what Kelly wrote about in her gloves off blog– at home — and now I live with it at MD offices.
    I have been fortunate with a Rheumatologist who is compassionate. I am with a new GP who is– well, new. I wish “working together” were possible with MDs and patients. we are not all the same. I wish people, generally, knew what RD is. My acquaintances never see me unless I am feeling well enough to go out, and I cancel stuff often because of RD issues. At least Kelly has people around her at home!
    I have no answers, just empathy. We must stand together, somehow, and stop minimizing this disease.

    Reply
  • April 13, 2015 at 9:45 pm
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    I’m sorry for what you are going through. I’m lucky my blood is drawn at my rheumatologists office and my nurse and his medical techs are great at iv’s and blood drawing. i don’t have a primary. I hope you will have some care from professionals that are “PRESENT” I wait for my rheumatologist sometimes for hours but i know that if i need him he will see me right away. too bad i can’t get any other doc like him. I fired a doctor today ,her office is terribly inefficient and she doesn’t understand. I know this disease has taken a lot of me but not many people understand. i’m deeply disappointed in people’s lack of empathy ,i hope i can learn from this and I thank you for sharing

    Reply
  • November 26, 2015 at 4:21 am
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    You are so right. I have seroneg RA. It took 4 board certified rheumatology physicians and 20 years for it to be diagnosed. My first dr said “Have you ever heard of the “F” word.? ” I had no clue what he flippantly asked. Tag, fibromyalgia, ignoring elevated CRP, sed rate!, crunchy joints, profound fatigue, etc. Second one was no better.. Third one had us waiting in harshly uncomfortable waiting rooms for 3- 3 1/2 hours to be seen. I tactfully brought it up to dr # 3, who said “I am very thorough and give each patient as much time as they need.” Apparently that was not enough, because she failed to diagnose my disease, told me that she had nothing to offer me and referred me to a pain clinic. My fourth dr did not believe either until I took pictures of my hands in the morning and he then did an MRI of my hands. Abba cadabra, you have RA! How can board certified physicians not pay attention to legit patients? Are they not taught that up to 30% of RA patients are seroneg? Called my dr today to see if I can get shingles shot as I am off drugs after having healing issues post surgery. Asked how long I should wait after shot to start drugs ( pred/ MTX ). And to clarify whether pred or methylprednisolone as that is what I had been on before. HA! He wanted me to come in for another appt just to answer these. I was not scheduled to go again till back on meds for 8 weeks. I am soooooooooooo frustrated!!!!!!!!!!!!
    I am a RN and though rheumatology is not my specialty, I feel certain I could diagnose better than all four of them combined. I have never been so poorly treated by other specialties. Abominable! Alll I and all of us want is to be listened to and cared for. Is that too much to ask?

    Reply
    • November 26, 2015 at 8:58 am
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      Amen. Thousands of stories like yours have left me asking the same questions. We need to see changes in rheumatology training.

      Reply
  • January 4, 2017 at 9:55 pm
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    Thank you so much for validating my RA life as it is today.
    I wish my loved ones had the patience to read the whole page so they could really understand me and what I go through.
    I pray for your peace and freedom from your pain. Regards, Diana

    Reply
  • January 26, 2017 at 4:06 pm
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    I think having RA and other auto immune diseases (so called invisible) is what makes us stoic. By the time we have a correct diagnosis we have pretty much been questioned up the wazoo, and made to feel like it may be exaggerated pain and that these strange seemingly random symptoms don’t fit their text books. I like many others don’t like to make a fuss. Maybe cos it’s just not worth using the little energy I have. I’m tired of being told that…” not typical of RA ” then see others with RA have same problems/ symptoms. I’m a number and they have boxes to tick. No time to have a real conversation and even less of a chance to be taken seriously or understood. So yes we say we are fine, it’s just easier.

    Reply

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