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avoid crowds like the proverbial plague! LOL Christmas shopping season coming up, will time my visits to malls when I know they are less busy, like in the daytime,to avoid the insanity:))
You’ve just described many of reasons I rarely take public transport. Just getting on a bus is an effort; suddenly faced with pushy commuters who rush the doors to get on and snag the rare seats, while I slowly get on and then have to stand for thirty minutes because the only disabled seat is taken by an otherwise healthy person. Then trying to squeeze past the sardine-like compression of human bodies to get off and being slow about it. By the time I’ve got to where i needed to go, the exhaustion has set in and then I’m faced with having to get through my appointments and get home again. So I’ve had to swallow my pride and just take my walking stick. People see it and are more helpful and respectful. Sad, though, that I have to make my disease so visible.
Sometimes it’s just worth the $40 parking costs to not have the hassle.
Kelly, I read your blog, saying, yes! yes! yes!! I can relate to ALL of it!! :/
I go to many conferences in my profession, some even as large as the one you recently attended in Chicago (same type thing – bunch of MDs, NPs, PAs and huge amount of drug reps!)…
When it gets to about 15 minutes before the end of a long session, I get up and use the rest room, or I go into a session late so I can get in and out of the ladies room. I scope out every bathroom in the place! I get the “blueprint” page out of the session catalog and circle them!!! (I really do!!)
Last month right after I got out of the hospital and rehab with my TIA, I had to go to a 4 day conference, but knew I would be unable to walk hardly any of it. My husband took me the first day, and we borrowed a wheelchair from the first aid office; he pushed me all day! People were rude, inconsiderate, etc. When I did try to stand, then use my cane and hobble to a display in the exhibit hall, I would get pushed aside, stepped on, etc. I would get to look at peoples’ name tags during all of this, and the rudest ones were the MDs, sorry to say, but it’s true, and the WOMEN were worse! (Gasp)
The next 3 days my girlfriend who works with me came with me and she pushed me around. Still meeting with rudeness every day! We would ditch sessions early for me to use the bathroom, or leave them early to get to the lunch lines, so we didn’t have a huge line to wait in.
Only once were we met with kindness – one pharma company was putting on a dinner/meeting, and when they saw me in w/c and friend, they immediately took us out of the long line and had us go in first! Wow!! But I realized why – everyone had to listen to iPod podcasts and watch a display- we were put in line first, to start early, so we wouldn’t hold up the line!!!! Sheesh!
Yup, rudeness, it’s everywhere! Don’t even get me started on shopping malls or grocery stores!!!!
Dear Marie, I was out all day after problems with FB this morning that delayed our leaving – SO I’m very sorry your comment is being posted so late – We had a wonderful day meeting a fellow warrior that I’d known on FB for over 2.5 yrs so it was worth it – and I’m always very glad to hear from you.
We use wheelchairs in airports and hospitals and have the same issues you describe. It’s hard to imagine people are so inconsiderate when the need for consideration is so obvious. – – We do meet those kind souls that stand out from a crowd – and thank them so warmly for it!!
Why can’t the nameof RA be changed to rheumatism ? So people don’t confuse it with just arthritis.n I know rheumatism is a different diease. Burt it is also similar. Or call it rheumatism B. Like hepitis B, etc.
One of my “favourite” issues is waiting for the elevator to arrive and when it does, having a ton of able-bodied people rush past me and ran into the elevator. When the escalator is relatively close by. Which I clearly cannot use because I’m in a wheelchair.
Or when I press the but for the automatic door opener and aforementioned able-bodied people think I did for them. While I wait to move through the door and can’t because they’re too busy getting ahead of me.
Sorry to post this late, Lene. Please see my note to Marie.
I’m only in a wheelchair occasionally – not every day like you are – but yes – that is how it is with some people. That elevator experience is just like mine – It would make a very pointed and funny cartoon – to show how foolish the behavior is when someone is a fly on the wall to see the whole thing happen. It’s like “what the hell, people? are you thinking” – I guess we still need some awareness even with “obvious” disabiltiy – – surprising.
Since I started dealing with RA about four years ago, I have told very few people. That is mostly for 2 reasons. One is what you talk about above: people don’t understand and/or sometimes don’t believe you. And second, because of responses like the one I got from my father (who I dearly love and am very close to): you are now going to be horribly disfigured and wind up permanantly in a wheelchair as an invalid. Now, of course, my father didn’t really say that, but I could hear those thoughts going through his mind as he expressed sympathy and yes, pity for what now had a name. I think that I find people’s pity the most difficult to deal with. They treat me as if RA is the sum total of my identity. It seems like once they know I have RA, they feel my brain suddenly quit functioning along with my joints. Very frustrating.
Rhreumatoid disease is incredibly complex and affects no 2 people the same way. We all have different ways to cope with this difficult disease process. Historically I have just kept my mouth shut. Since I found Kelly’s web site, I have begun to change my approach. Thank you, Kelly for showing anyone who wants to look, the many faces of RA.
Well, that’s my story and I’m sticking to it! 🙂
Dear Susan,
Thank you for posting. Please see my note to Marie above & accept my apologies for posting late.
I am glad that anyone feels empowered by knowing that we are not alone. We should all feel that it’s acceptable to say as little or as much as we need to have the understanding and the care and the accommodation we need. We’ve had many discussions here about the way that most of us become “prvate” about RA – here is a link to one: http://www.rawarrior.com/the-tug-of-war-of-ra-awareness-privacy-of-pain-agony-of-disclosure/
another: http://www.rawarrior.com/rheumatoid-arthritis-disease-may-be-the-scarlet-ra/ – I think I shall create a tag for RA Stoicism asap to bring the rest into a list that’s more accessible.
I do most of my shopping online. It’s just easier. No crowds, no lines, no waiting. However, when I go out, with my fella, there are crowds and the odd street sign that seems to jump in front of my body.
I do not know if it is the illness or my natural inclination, but I run into things. A lot.
My fella is probably my best crowd strategy. He keeps his body between me and others, providing “blocking.”
Youre right Jennifer and I too avoid crowds – but sometimes you really want to be somewhere – like these places I went this fall. BTW, great guy!
Yes the eye rolls, skepticism, and invisibility are part of living with RA. Also not having the validation that usually comes with a serious disease makes dealing with a diagnosis of RA worse than it needs to be.
I despise having to use a cane, or a rollator walker when I am really feeling bad, so it used to be I avoided the crowds; unfortunately, the things I love doing involve crowds. So now, I say to myself, that’s just too bad. There are many people now who see me with a cane or a walker, and it still doesn’t matter to some people…..others are so gracious and kind….
Your story brought back nightmares of when I had to commute to Sloan Kettering in NY for my thyroid cancer. Talk about pushy, shovy! Try the NJ transit trains into NY during peak rush hour. Oh brother is all I can say. You are lucky to even get a seat at all. These travels brought back fears of childhood. Like when you were so little and thought you had lost your Mom. Panic! I always brought a travel buddy with me. Either my hubby or my preferred travel buddy my daughter. Both have very pointy elbows, chiseled tongues and a piercing look that would stop anyone in their tracks. I no longer do crowds anymore. And if I ever have to travel during a crowded time into any crowded place or space, I will have my pointy elbow escorts at my side. They are for rent and cheap too (smile).
Because I look healthy, people feel it is no problem if they bump into me in a line, or movie theater, or shopping. Usually at that point I’m trying to simply make it through the trip, and that bump can set off such pain that I feel like I’m going to burst into tears or simply fall down screaming. Iron will is the only thing that keeps me from doing that, so I simply nod when they say “sorry” and exit to a private place ASAP where I can cry, pant, whatever to cope with the pain.
I really try and avoid crowds at all costs. I’ve wanted to go to a few events like BrickCon (the Lego Convention) with my kids, but I knew I would be jostled constantly so I didn’t go. Holiday events like treelightings? Avoided for the same reason.
If I want to see a movie, I go at less busy times, like 11am on a Saturday or a Tues. at 4pm. I end up paying more, but shop for holidays BEFORE all the sales. I just can’t go to Toys R Us from Thanksgiving to January.
Luckily I’ve found ways to avoid most of the crowds, like the movie theater thing I mentioned above. I take my children to a small local zoo, rather than the major city one. I shop at Half Price Books or a small local new bookstore rather than the bigger retailers when I need to check out a book in person. I visit the smaller library branches rather than the busier main one. Trader Joe’s, during off hours, is easier to navigate for food than my large busy grocery store. I shop online a lot.
If I’m in a crowd, I’ve learned to take pain meds BEFORE I enter the crowd, and carry water and extra meds with me (for when I need to retreat to a private place to deal with the pain).
I was thinking about you in that jostling crowd Kelly, and wondering how you were going to make it (((hugs)))!
I was less jostled in this crowd than I’d be at a mall – but elevators and bathrooms were trouble for example – and I HATE food lines… Thanks for thinking about me!
This was one of the un-expected things about RA that really affected my kids the first couple of years – they’d see their mom knocked down – mostly by people in their 70’s and 80’s with grocery carts who are determined that it’s my job to somehow get myself out of their way fast enough –
Soon after being diagnosed with RA, my husband and I attended the theatre for our anniversary. Still in denial, I insisted on wearing heels. By intermission I could barely walk, and standing in line for the restroom would have been impossible. The handicapped restroom had almost no waiting, however. But what it did have was a very rude woman who tried to cut in front of me. She demanded to know what was wrong with me, and, embarrassed about my obviously inappropriate heels, mumbled something about my back. Which was true, but not the whole truth. I wound up leaving in tears, hardly enjoying the rest of the show.
But it won’t happen again. Thanks to this blog and others I am soo much more confident in my comfy shoes and I am quite happy to tell people about my RA in gory detail. Thanks Kelley, and everyone else, for sharing your stories and giving me the courage to (politely) educate the public one person at a time.
Oh Kelly! You have described a couple of my recent shopping experiences.
I probably should use the motorized cart because it’s so so difficult for me to walk around the store. But there is no where for me to put my four year old who is always with me or all the groceries i need to buyin that tiny basket, so I force myself to walk. But when I get to the check out line and there are only a couple of lanes open, both with long lines, I am ready to break down and cry. Or walk away and leave the cart there. I can’t use the self check out.. Way too painful. Last time this happened I went to the express checkout. I had way more than 14 items and the woman was not happy with me. I explained to her I am disabled! I can’t stand in line. You could tell by the look on her face she didn’t believe a word I was saying. I dread being put into those uncomfortable positions by people who are healthy & think that I “look fine” & have no idea what a struggle daily life can be for someone with RA.
I think for me, the hardest crowd issues to deal with are at things like festivals & street fairs. I tend to be a little on the overly optimistic side when I do feel good, so I will go and then regret it when I start walking around. People walk around like they are the only people on the sidewalk or in the street so getting run over becomes like another side effect of RA except there is no medication that keeps it from happening. Because my RA has affected my feet & back the worst, I’m always looking for those places to be able to sit, kinda of like playing connect the dots thru the festival. I aim for the next available spot and scope out the next one when I get sat down :). Inevitably though, I end up getting beat to the spot by some tweener with a crew of friends and I just about pass out because I’m having a muscle cramp in my back from walking funny because of my aching feet. I’d love to have a motorized something or other but a: they aren’t small enough to use without running people over & b: it would need a battary 4xs the size they currently are so I don’t get stranded a mile away from where I rented it or the closest plug. Since my friends are smaller than I am (literally, they are barely 5’4″ and maybe 120lbs soaking wet!), I can’t expect them to push me in a wheelchair as I am what most people would call a “big” girl. I do have to say though, valet parking is once of my best friends when it is available!!
I read your article and all the posts. I am always so shocked at the lack of compassion of the human race. A coworkers wife was at a popular discount store for the black Friday sales with a disabled friend at the opening. The disabled friend was actually knocked down. I was completely appalled. The human population is getting so rude. Is our civilization getting so large that we can’t be kind, friendly and compassionate to each other. What is up with that!
As far as my RA. I have kept is hidden for 5+ years now. The people I have told have been less that respectful and understanding. They always end up showing my that they have a knuckle with arthritis in it or something like that. I try to explain and have never been able to fully get the point across. Most people are so into themselves and can’t seem to relate to anyone else. Wouldn’t it be nice to be around like minded people and those who also have RA. The human experience would be so much more loving, caring and understanding. How would it be.
Kelly, never mind the conference crowds — forget about Black Friday deals — I have trouble navigating the “crowd” at the grocery store. Most people (myself included) are self-absorbed and when someone parks their cart in front of me to look at whatever they want to buy, they fail to realize that YES, THREE STEPS around you is more than I can make, most days. I arrive at church half an hour early and I sit in the pew until everyone else is gone so that I don’t have to fight the crowd in the lobby. I guess my way of dealing with crowds is to avoid them as much as possible. A friend of mine recently said, as we were leaving a restaurant and I was moving very slowly because we had been sitting for quite a while, that she wants to write an “essay” (if you will) about how people react to me. I said I’m too busy getting out of my chair to notice how people look at me. If she wrote such an article, from a non-RA patient’s point of view, would you care to read it? Thank you for all you do — it is such an encouragement to know I am not alone! God bless!
Everything you wrote could have been written (or has been mentioned) by me – and I THANK you for making me feel not-alone! Most of these things have affected my kids and dear friends as you say – who observe how I’m treated if I “pause” because I’m so afraid of being knocked over – because I HAVE been knocked over – often by people in their 70’s (I live in Florida). I always “pause” in malls or airports to see where people will go because I cannot afford the steps to walk around them — JUST like you said! and I’m afraid of being knocked down..
I have tried to explain to other people about not being able to fight crowds anymore and they don’t get it (not even my doctor)…My husband does all the grocery shopping now so I won’t have too!! At first he decided to go with me and when he saw how slow I move and how I can’t navigate the crowd he said nevermind just make me a list and I will go and has not complained about since…I also have trouble dodging people when they are walking straight toward me or into me!!! I just can’t step sideways quickly and make that type of movement so I stop dead in my tracks and make them walk around (or bump into me)…I am a teacher and can’t dodge the students in the hall at all!!! I do get bumped into alot!!! I am so glad I am not the only one who is affected in this way by my disease!!! Thanks for this topic Kelly!
Jewell
For the last few years, I felt like an alien because the exact thing you wrote about happens to me. I do the exact same thing, too! I’m sorry we both have RA, but I’m glad to know I’m not an alien 😉
AND, I’m going to show your comment to my kids so they can see I’m not the only one!
My cane is my friend in crowds, especially. It does terrible things to my hand, but it sends a clear signal to those inclined to pay attention that they need to be a little more patient with me and makes it worth the tradeoff. It certainly doesn’t work with everyone, but it does make a big difference with people holding the elevator (and other) doors open for me, not driving up my heals when I’m crossing the street, or blocking the sidewalk as I’m passing by a drive way (people actually back up!). In the airport I get the wheelchair so I don’t have to stand in the security line for an hour and walk the mile to the gate, I board early, again so I don’t have to stand in the walkway while everyone’s putting their bags in the overhead bin. Maybe I look crummy enough that I don’t get weird stares or hostile comments (I don’t think I look so bad), but to me that cane is a signal that most people get and realize that no one would use a cane unless they really need to.
Yes, a cane – or a neckbrace – is a sign that helps some to realize there is a mobility problem. I cannot carry a cane because my fingers, wrists, elbows, shoulders can’t do it. But for those who can, it’s a good idea. Recently I did use wheelchairs in airports of course, but still waited an hour and still was told to get up and put my own things on the belt and “Push” them through the scanner. I did what I could as my daughter rushed to do what she could but also told them no, I can’t about part of it. They were callous about it – it is an individual thing, depending upon the airport. That was leaving Ohare in Chicago.
Kelly what an intuitive post! I live in NYC and have to take the subway to and from work everyday, and while I knew I dreaded the crowds and the PUSHING (!) I somehow never made the connection between my RA and my dread. Not sure if that makes sense, but it was really your post that made me say Yes! that’s why I dread my commute so much.
People (generally) in NYC aren’t very considerate, especially to an otherwise normal looking 30 year old, they have no idea RA has ravaged my hips. Being small doesn’t help, I get pushed around like crazy.
If I am able to get a seat on the train, well that’s just heaven. Don’t even get me started on the stairs…
Thanks for bringing to light why I dread my commute so much more than ever seemed rational, I guess I was in denial!
I just gasped right out loud when I read you were on the floor with a chair and noone moved a muscle to help you. RA or not. And women! I’m shocked. And I get the elevator door thing too. I just automaticaly reachfor the doors first and become the door holder and let everyone else in so I control the door. It’s a weird panicy feeling isn’t it?I don’t know where you find the strength and patients to explain RA to the endless masses of rolling eyes,or glazed over eyes who have disconnected. I’ve stopped explaining. My new thing is taking meds in public. Do I take them in front of people with the awkward looks of “what the hell does she have and is it contagious”? Or the ” she’s a prescription junkie look. Or do I go into a bathroom and hide to take my meds and really feel like a junkie LOL!
I am terrified of traveling for all the reasons you all speak to. I’ve tried to put myself in other peoples’ shoes and I think that most people are preoccupied with themselves and not even registering what’s going on around them. Sad but true. To remedy that, I find carrying a cane helps a lot. I hate carrying the cane because it hurts my hands and ties up a hand I often need to steady myself. BUT it is a trade off. I find my cane works like carrying a sign that says I’m ill or I need help. I find that when I carry a cane people open doors and offer to lift things. Yes, I often leave it behind because I don’t want to tie up a hand.
I’ve heard this suggestion several times and it’s good if you’re able to hold a cane. I’m not able to hold a cane so I lean on the handle from my rolling briefcase to keep myself steady. A neck brace that I often wear can also help others notice that you are different, serving a dual purpose when traveling. But in airports recently I’ve been pulled aside every time I go through TSA.. And the neck brace aggravates some of them. Last time a supervisor stepped in and chastised the agent, saying let her alone.
There are so many reasons that I avoid crowded places! The first is that I do move slower than everyone else and I am quite self-concious about it. If I am shopping, walking with even a small package feels impossible after a few minutes! If there are many people, I find that I just can’t tolerate being touched or bumped by anyone. That seems to just tigger greater pain all over! Traveling is another story all together as it’s exceedingly difficult to carry a bag or even roll a suitcase very far. And how about feeling clumsy? I feel like I can’t walk straight and have total butter-fingers all the time! Darn RA makes every single thing we do more difficult or at time impossible! I know that there are many who feel just like me! As someone else posted though, our disability is sometimes invisible so no one has a clue how we hurt all the time! One moment at a time is all we can do!
Kelly:
Once again you have described what I thought was just me. My husband and love going to the farmer’s market in the city near where we live. However, since I have developed RA it is just to painful and difficult. The crowds are incredible and people just stop with no warning, parking is scarce and we often have to walk several blocks just to get to the market. Since RA has really impacted my knees, sudden stops are very painful and being jostled and rammed with strollers causes pain beyond what those who do this could possibly understand. So, we have had to stop going to the big farmer’s market. Which is sad, since healthy,locally grown food is so important to eating right. We have found that a small farmer’s market has opened in a village near us, not nearly the variety as the big market, but also not crowded and we can park close to save my walking. Thanks for your blog, more than once I have thought, I must just be lazy or that I must be the only person who has this situation, then I go on line and you have a posting on just what I was dealing with. We are so very lucky to have you.
Here’s another problem I have with crowds: I have thin fragile skin from Prednisone. My skin both bruises and actually tears from the slightest touch, even a grazing touch, and forearms are the worst. I sometimes walk in crowds with my arms folded in front of me, trying to protect myself from the bumps and jostles. Add that to the difficulty with joints and slowing of movement, and walking in a crowd has become quite challenging. And elevators are problematic for all of the reasons above.
Use your spare handicap car tag and the documentation that goes a long with it when need to get special treatment. Dont b afraid u deserve it. They have no clue about us.
Good idea Dee.
This makes me so sad. Tonight I stayed home rather than accompany my family to the movies. I didn’t feel my knees would hold up. I hate this.