Rheumatoid Awareness: Judgmental Eye Rolls Versus Help & Compassion

Treated like you’re fine when you’re not

A comment this week by Lisa sums up one of the most important reasons we need awareness for Rheumatoid Disease, and one of the hardest to explain to others.

“RD awareness would mean that I wouldn’t be treated like I am fine when I am not. It would mean that my limits would be recognized and if I needed help because of pain or weakness, it wouldn’t bring eye rolls and judgment, instead of understanding and compassion.”

It’s not about sympathy. Stay with me.

  • If someone had a sprained ankle, would he be asked to mow the lawn? If he said he couldn’t, would he be accused of seeking sympathy?
  • Who would ask someone with a broken wrist to chop wood? And if he refused, who would say he’s just lazy?
  • Does anyone think of a cancer patient as a hypochondriac due to multiple medications and frequent trips to doctors?
  • When a woman gives birth, who expects her to suffer in silence completely alone?

Commonly, such assumptions are made about people living with Rheumatoid Disease (PRD). As the examples show, it’s utter nonsense to expect PRD to live as if they do not have it. And it can be cruel.

PRD just want reasonable reactions to their situations.

store electric riding cartToday I got both the kindness and the callousness. I’ve often wondered when my joints are at their worst, “What if I have to leave the house when it’s like this?” I’ve been in the car – or in another city – when it got bad, but always with Katie Beth or Leslie to help me. Not today.

My knees and other joints have been extra naughty lately. I’m trained to go back to sleep, but the pain wakes me up several times a night. So I knew it would be hard to take Roo to his doctor’s appointment. Driving is nearly impossible when you can’t put any weight on the right leg.

I limped to the car telling DJ “I ought to make you drive us.” But he had track practice. I hop-limped into the office. During the hour, I noted a slight eye roll, but that was not the worst thing. My knee hurt so bad even sitting with it extended, but I felt like if I touched it, it would look like I was trying to get attention. The worst part was trying to get to the car. Leaning on Roo and refraining from any yelps, it was a grand achievement. But the silence from others was awkward. Yes I’ve told them about RD, but it was like telling them about a trip I took with aliens.

I sat in the car 20 minutes until I tried to drive again.

Now, the kindness. We needed gas and stopped at the Sam’s Club. As soon as the older attendant noticed me hopping around the car to ask for help, he said, “You sit down, I’ll pump it.” It was like I really was on a trip with aliens. He kept saying things like “Everyone needs help sometimes. It’s okay. That’s why we’re here in this world – to help each other.” For some reason he even said, “It doesn’t matter how old you are either. We are always glad to help, just ask.” The kindness was overwhelming.

After that I was emboldened enough to try to get what we needed inside of the store. Roo helped me limp to the door and I asked for an electric cart for the first time ever. I never wanted to use one because of my shoulders, but they weren’t as bad today. The controls were very easy to operate, but my hands hated using them. The girl at the pharmacy was a perfect angel too, helping as much as possible.

Bottom line

The truth is, I couldn’t have done it without Roo. The orange juice and the chicken proved my shoulders might hurt less, but are still useless. Every day with RD is not the same; but no day in the past eight years with RD has been even close to what it was like before. IT’S HARD TO UNDERSTAND. But I hope these little examples will help someone realize that it’s worth it to try.

Rheumatoid Awareness Day is a week away!

Much of what people assume about PRD depends upon what they know about the disease – or what they don’t know. Rheumatoid Awareness Day – February 2 is finally an opportunity to get the truth out about RD. Click here for updates about awareness day events sponsored by the Rheumatoid Patient Foundation (RPF). Or plan your own event for Sunday February 2 – cut some indigo ribbon and pin it to your jersey. And post a picture on the Facebook Rheumatoid Awareness Day event page.

If you have a blog of any kind and care about someone with RD, write about what awareness would mean to them (or you) – and join our #rheum blog carnival.

AND, click here to read about how you can double your gift to RPF in honor of Rheumatoid Awareness Day. A gift of any size, such as a dollar for every year you or a loved one has been diagnosed, would be matched thanks to a grant from Crescendo Bioscience.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

25 thoughts on “Rheumatoid Awareness: Judgmental Eye Rolls Versus Help & Compassion

  • January 28, 2014 at 9:46 am
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    Hey Kelly
    I hope your feeling better and taking it easy for a while now <3
    I started reading your post and wanted to scream at the monitor….eye rolls..AAAGH! "LET E AT EM', LET ME AT EM!! LOL'I think you do well to sit in the car for any length of time full stop!
    Silly uneducated people eh?i kind of pity their ignorance do u? and did u say u were taking your son to a DR app? isn't that where you tend to see people looking no so well…dear me bring on the awareness day I say!
    I really hope you manage to stay comfortable once u got home and I shall send you a gentle virtual hug <<>> and not condescending sympathy but more a discreet nod of understanding?
    All the best x

    Reply
  • January 28, 2014 at 10:38 am
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    I was given a tool to open my gas tank and it hurt so much to use. The best attitude about asking for help has been at gas stations. At first when I asked 10 years ago, I got the eye rolls. I get them less and less.

    I feel like because of our “Cowboy up” culture, we don’t treat people kindly when they ask for help. I try to remind myself when I get the eye rolls that it’s only going to change if I keep asking for help And over the years it has improved, but there is no shortage of ignorance. Excellent example. Thank you for sharing.

    Reply
  • January 28, 2014 at 11:18 am
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    I simply do not care anymore. I don’t care who rolls their eyes, don’t care who has anything ti say, don’t care who has doubts about whether I need an electric shopping buggy. I get one every time. Every. Single. Time. That said, I don’t expect for people to understand, I don’t expect for them to be interested in understanding anymore. I am in pain! I’ve been dealing with it since I was 8 years old. I’m 35 now, and I spent all of my childhood and most of my 20’s apologizing, worrying about people’s opinions, and hiding my pain and limp, but in the famous words of Sweet Brown… “Ain’t nobody got time for that!” Not anymore. I know my limits, and that’s just going to have to be enough. It always feels great when others can see that I’m struggling and go the extra mile to be helpful or patient, but some people just don’t have that in them. Some people only help others within the small bubble of categories that they can understand or relate to. They won’t have compassion or see the need until it directly affects them. I’ve accepted that, but I will not struggle any more than I have to to make anyone else more comfortable with me. It’s my job to be who I am and take the best care of myself that I can for my sake and the sake of my family – and to show appreciation for each and every angel that God sends to help me get through y day – whether it be someone who holds the door open, or someone who offers to help put your groceries in the car, pump your gas or whatever the case may be…(surprising how many grown men will hold the door for a few seconds, and then shut the door in your face if you’re not limping fast enough to get the door within their apparent 8 second pain threshold for holding the door for a limping lady. *Rolls Eyes*)

    Reply
    • February 3, 2014 at 7:51 pm
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      I was dx at age 10, and somewhere around my early thirties (I’m 42 now), I reached that point of not caring, not apologizing, etc. I wonder if one has to simply live with this disease long enough to get to that point? 🙂

      Reply
  • January 28, 2014 at 12:57 pm
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    Last summer, shortly after I was diagnosed with RD, several of my coworkers were going for a walk at lunch time. One of them tried to talk me into going, saying “If Matilda can walk, anyone can.” Matilda (not her real name) was 7 months pregnant. I couldn’t believe this coworker would compare pregnancy to an autoimmune disease! (I was on MTX and also on prednisone because the MTX wasn’t doing the job.)

    Reply
    • January 28, 2014 at 2:31 pm
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      Sometimes there is no cure for ignorance! Most people are just plain clueless. There is no hope for them. Don’t even try to understand as it will drive you nuts.

      Reply
  • January 28, 2014 at 5:05 pm
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    I am waiting for the rolling of the eyes….I am a high school teacher and have been asked to participate at the graduation ceremony in May. I usually volunteer for activities, but graduation is freaking me out…my hands are on fire and I am just starting mtx & prednisone. I am just officially diagnosed. The idea of hundreds of people touching me…shaking hands or hugs is overwhelming. I used to think weak handshakes were for weak people and now I cringe when someone attemps to grip my hand!

    I am new to this “game” and thank Kelly and other warriors for all the shared information!

    Reply
    • January 28, 2014 at 7:19 pm
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      I have occasionally wrapped my hand-shaking hand and wrist in an acewrap. Then when someone puts out their hand, I put one hand over the other and say simply, “sorry, sore wrist.” People sometimes follow up with questions, but much less so than if they can’t see anything wrong.

      This also prevents the uncomfortable-for-both moment when someone grips my hand so hard I feel like the bones are breaking, and I reflexively pull my hand away and grimace!

      Reply
  • January 28, 2014 at 5:06 pm
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    I’d like to give a shout out to the gentleman who helped. I too know how tough it can be, the eye rolls, the questions about the meds, the comments. But I choose not to focus on those people. My time and energy is better spent focusing on the goodness of people. My prayers are better spent giving them to caring people, not jerks. Awareness is crucial in this case and I help in anyway I can to spread that, but if someone won’t listen, I can’t waste what little energy I have trying to change them. Either they will come to understanding or they won’t. But I always take time to thank the ones who do understand, or at least try to.
    So again, BIG shout out to the gas man!
    And thank you Kelly for teaching me the ways to teach others about this disease. And for teaching me as well. You’ve been a light in my dark times.

    Reply
  • January 28, 2014 at 5:22 pm
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    Great post. I really like the part It’s Not About Sympathy (although I like sympathy sometimes too). People just don’t know and don’t understand. Your post on “10 Misconceptions” listed in the Recommended Reading is also so insightful, as are the many responder’s comments, all perfectly describing so much of what we go through on a daily basis…

    And btw, someone else commented on gas stations, for me the worst. I wish I lived in a state like Oregon where they still have gas station attendants; I would gladly pay more for the service. On a couple occasions, having underestimated the degree of pain in my wrist and fingers, I have had to ask another person getting gas if they could open the gas tank cap for me. People have responded with help and kindness. The grocery store, on the other hand, is a place where I often see the eye roll, and sometimes its cousin, the raised eyebrow, as in really?? you need help with that? ….Yeah, I do.

    So great thanks to Kelly for her work on Rheumatoid Awareness Day and for encouraging all of us to participate in whatever way we can!

    Reply
    • January 28, 2014 at 5:42 pm
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      I’ve been debating whether to share what happened when I was on a rare occasion >>alone<< picking up groc. Yup...

      Reply
      • January 28, 2014 at 6:08 pm
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        Oh Please do Kelly! it’s through sharing experiences that we know we’re doing just fine.
        I love reading all the posts, they’re hugely appreciated!
        As is your humour (loved the aliens part:) )
        x

        Reply
        • January 28, 2014 at 6:13 pm
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          haha. write it as I think it. It’s so important to laugh. Or this stuff can make you cry.

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  • January 28, 2014 at 5:51 pm
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    Great article. Accurately describes our experiences, though I would guess most of us get a lot more eye roll than kindness!

    Reply
  • January 28, 2014 at 7:08 pm
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    Fortunately or unfortunately for me my hands and fingers are obviously disabled from RA.

    I also ride a mobility scooter and can use both hands on the tiller.

    Some people are very intolerant/rude.

    I find though some people are real nice and helpful and if I am sitting on scooter outside a shop for someone to come out & serve me people will think and stop and say are you OK can I open door for you.

    Reply
  • January 29, 2014 at 1:16 pm
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    Thankfully my state has full service only. Jersey girls don’t pump gas! My heart goes out to you and everyone affected by this disease. It has wreaked havoc on me for five years now. Thankfully, I have learned to be done when it is too much and tell people so. My true friends grumble but know now.

    Reply
  • January 29, 2014 at 4:31 pm
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    Teaching, RD, and handshakes:

    As a teacher, I’m always grateful that Parent-Teacher conferences are during cold/flu season. Parents thank me for being considerate by not shaking their hands!

    Reply
  • March 6, 2014 at 10:18 pm
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    I have actually not had a lot of bad experiences, mainly, I think because my job history was all physical work. Nursing and waiting tables. Both which are hard if you can’t use your hands. Last night I was at my daughter’s gym where she does tumbling. I had really bad day already. Went to my rheumatologist, a 45 minute drive, got stuck 4 times to give blood. Then went for a mammogram, so fun. I went to her tumbling class where all the cheer moms hang out and a woman in shrubs made the mistake of speaking to me. I told her about both appointments today and mentioned disability. She said “its always the people that really need it that can’t get it” I informed her that people with auto immune diseases get a fast past, but she just looked at me like I was a faker and she doesn’t even know me. Was shocked and dismayed. Before medication I was in so much pain that even having a sheet on my feet at bedtime made me want to cry. Now is better, but I hurt 27/7. My husband is understanding about the pain but when I try to tell him about the pain and further disability in my future he shuts down. I ask him, what’s going to happen when I can’t take care of you anymore?

    Reply
  • March 7, 2014 at 12:59 pm
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    Sometimes strangers are kinder than family & friends. I am 57 yrs. old. & have had RA for 39 yrs. I’m single, have a wonderful 16 yr. old son, & my mother lives with us. Life is not easy when you hurt & are very depressed. I have gained weight & don’t get out much& I just feel like giving up. Why are people so uninformed about RA? Just because you comb your hair, put on a little make up & wear decent clothes means you feel good. Right? No, wrong. Pele with RA fake it alot or I do.

    Reply
  • March 16, 2014 at 8:01 pm
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    the non-verbals scream louder than words, sometimes!

    Reply
  • March 24, 2014 at 7:05 pm
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    It’s funny, or maybe meant for me to happen on this article as I was researching RA support groups. This is what I posted on FB about 3 hours ago. Kelly, reading your article was exactly what I needed. I don’t wish you that pain but sometimes it is comforting to know I’m not the only one!! Chin up!! I understand the looks and judgment! XOXO

    Post on FB:

    Please bare with me as I vent… I am just frustrated at this point!!
    As many of my fellow rheum (RA, lupus, MS, Fibro, etc.) patients can attest to, our diseases are here for the rest of our lives and can cause a lot of pain that others do not understand because we tend to be young when diagnosed and surely no 30 or 40 year old should suffer from a disease that makes our bodies feel like 80 year olds.
    Over the last couple of months, I have had increased joint pain, which has caused insomnia. Pretty common for most of us. My primary care put me on the trazodone to help control my sleeping and pain. Often times the medicine allows a rheum patient to rest and decrease pain. Of course, my body wants to make a point that it is in control and I’m at the point my hands alone cause such sharp and aggressive pain that I’ve literally almost cried half a dozen times today alone. I can’t even take TP off the roll thanks to the pain in my thumbs (always have been my trigger points) and had a bit of a reaction in front of one of the bosses today, that freaked him out a bit. I have friends that saw me when the pain was at the level of walkers & wheelchairs. I’ve come a long way!! That I know for sure. The pain in my hands is just as bad as then right now. Fingers crossed my feet and knees don’t get any worse like my hands.
    Don’t misunderstand the point of this post. I don’t want pity, God gave me this disease for a reason. Why? No clue yet!! But I post merely to remind others not to judge another based on how a person looks. There are days like today that I am reminded of that. My point is also to not judge others when they make a decision we don’t agree with due to what they are going through at that time. Days like today, I get why people with sharp, aggressive pain commit suicide. First, don’t freak by that statement!! I never would!! As my fellow friends in law enforcement are trained in, the fact that I said it should say I don’t intend to. I KNOW my doctor’s will get me through this. I love my son, parents, family and friends too much to put them through it. But I have empathy for those that do make that decision.
    For those that know they judge on that… Ask yourself this. Did I do everything I could to understand my family member/friend and what they are dealing with? 9 times out of 10, you have no clue what is going on. But when it comes to pain patients that commit suicide, did you ridicule or tease them about their pain? Did you offer to help them in anyway? Before anyone says something to me about not asking for help, I’m getting better about it. Love one another as you would want someone to love you!! UNCONDITIONALLY!!! Until then, I’m trying to remember my reasons to smile!!

    Reply
  • May 12, 2014 at 12:35 pm
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    I tend to be pretty open when it comes to talking about RA with people who know me. But when someone asks you what’s wrong and you tell them and they immediately go into “their” arthritic knee, I shut down. Being a depressed person, it is hard to read about RA every day but the discussion I read on RA Warrior about re-naming this hideous disease struck a cord with me and reading your comment about “rolling eyes” and asking for help hit home.
    Your using a motorized cart made me think of the few times I’ve really needed to use one in a store like Wal-mart and they either need the battery charged or some ill-mannered child is speeding around the store in the only cart that works and that really chaps me. I blame the parents for that one. I can say that as my children were growing up, I would have been horrified if any of them would have even suggested on playing in one of those carts!
    I am writing a post about “changing the name” of this disease on my blog. I began writing a blog about living with RA, life experiences, cooking, crocheting and whatever else is on my feeble mind. Crocheting has been a good past time that I was taught by grandmother and aunt and I have found that it is one thing I can do having RA. I have little tricks I use to take pressure off particular joints I am having trouble with.
    I have to laugh through my blog, because laughter is the best medicine, so join me on my blog with a little humor, occasional sadness and just all-a-round living with RA. Thank you so much for all your work and I hope this post finds you feeling better. To visit my blog: heartofdixiebyjohnel.blogspot.com

    Reply
  • January 3, 2016 at 3:13 am
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    It’s hard when we try to carry on as if we’re normal. I can have severe foot and ankle pain, so much that I limp on both feet and can barely put my feet on the ground sometimes it’s so painful. My kids are grown so my husband sees me daily, but the rest see me weekly or extended family less than that. My family completely forgets that I suffer from RA, and I’ve even had one of my family members mock me/imitate me walking as I approached. He was thinking it was funny and not even relating it to RA. I’ve had other family members say things like “Oh that’s right…you have RA” using air quotes, when they say RA. I could give so many more examples, but it’s very frustrating and so painful physically and emotionally.

    Reply
    • January 5, 2016 at 11:51 am
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      Tracy, You said “It’s hard when we try to carry on as if we’re normal.” This may be the hardest injustice of RD – that others require this or we require it of ourselves. Sometimes the heart pain of being misjudged is as bad as the physical pain of inflamed joints.

      Reply

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